The I'm in Pain with a capital P thread

[LoriASoCal]

Okay I'll start- I might be the only one to use this thread but sometimes I just want to scream with how much pain I'm in. Thank God it's not as bad as it used to be but even 4 to 10 days out of every five weeks seems too much.
I'm armed with all my alternative NSAID questions. I'm ready to have another 'talk' with my rhuemy about pain control. I'm taking the steps. I'll probably exercise after this to try to shake some of it off.

Sometimes I'm in so much pain I don't know what to do with myself. I'm on deadline again and it is ticking me off because my infusion and my deadline are ill timed. Deadline today...Infusion Tomorrow. Okay so they won't always line up. Editorial deadline is every 4 weeks and Infusion is every 5. But I think that means they are going to bump heads quite often.

What to do? I've been working on becoming a writer as my primary job so that I can work and not leave home but it still is very difficult for me. And sometimes I have to leave the house, like today.

It could have been so much fun if it were me in a different body today. I went to lunch with a really cool famous person and conducted an interview with them at a great restaurant. Something I would totally LOVE to do if my body were cooperating. Instead it was such a strain to get myself out the door, to drive, to be personable and intelligent. I hate this disease.

Once or twice a month I have to interview someone- Why can't I just do that? I'm not asking for the world- I've reduced my expectations in life. I don't need to be rich or powerful or important. I don't want to be disabled by this. There has to be some way I can work and live and enjoy life. All I want is to be a productive person living a fairly normal life.

[easydoesit]

I'm sorry to hear about that.

I can relate. I have been in so much pain recently that when I feel a sneeze coming on (the ragweed is setting off my allergies) I tense up because I know the amount of pain it is going to cause in my upper back and shoulders. I've actually somehow learned to stop a sneeze that is about to start in order to avoid this.

Not only that but my hand is so painful that I can hardly lift a glass to drink from, and if I move it the wrong way I get a shooting pain that is excrutiating.

To me it feels like coping with this disease is practically a full time job itself, and I also can't stand how much it takes from me. All the things I could and would be doing were it not for this, it can be depressing.

[LoriASoCal]

Well, by some mix up-I only got 3 vials instead of 4 this time. And I don't feel like it's working as good either. I'm so bummed. I'm worried how this is going to affect my next five weeks. Of course I was flat-out lied to in this 'mix up' . I'm wondering what steps to take to insure it doesn't happen again. And I kind of feel like it all depends on if I manage to get through it okay.

If I do, I'll just confront the person and give them some rules to live by when infusing me. If it becomes this huge problem and I get really sick as a result, I know I'm going to be angry. I don't want to get anyone fired but I have enough goods on this person, provided someone was willing to listen to me, to have that happen. Anyway, it's too much to go into here but I'm wondering if anyone else has had their medicine mismanaged.
It's horrible to barely feel as though you have control because you have to take medicine to begin with but when someone's disorganization causes you to lose a whole vial of liquid that should be in your blood stream that the insurance is charged over $600.00 dollars for ( yes my 4 vials is over 2400 dollars every 5 weeks)And things like this have happend before- accept that she was always able to 'borrow someone elses medicine so it had a zero negative impact on me but clearly showed her disorganization- oh and it's always someone elses fault not hers.
Here's the bad part she's a nice person. She's a pretty good nurse.She's learned to get me on one stick which believe me is NOT easy. And we chit chat about my grandchildren and her children.... But this organization problem she has has caused me to suffer. First with the enbrel -that started with her, not turning the paper work in in time. She would blame the insurance company but after following the paper trail each and everytime month after month(because my insurance company authorizes by the month) the fault always was in her lap. Then since I began remicade I can't tell you how many times she's rescheduled my appt. by a day or two because my medicine hadn't arrived yet. So then my whole week and all my appts and my work schedule has to change to suit her. Initially I complained to the doctor but she was able to snow him.
I'm sure I'm not the only one with these issues with her- if she's disorganized I'm sure it reflects in her other patients and work. Basically, I really like this gal. But her lack of work ethics-not turning paper work in time ( and now adding lies on top of that)has caused me to suffer with enbrel chronically being late. Suffer changing my schedules all the time. And now, actually impacted my healthcare.
My heart thinks ,but she has children and she's so nice 'but ''my mind says, you wouldn't tolerate this from someone else. And it's serious. it's not some small slight.' A whole 600.00 vial of medicine did not go into my viens and I already feel that it isn't working as well because of it.
I want to handle this diplomatically. A) I don't want to see her fired... B) I want to be taken seriously C) and above all I want to have the behaviour stop so that I can get good medicial care and so that I don't have to stress as to whether or not that is going to happen everytime.

Has anything like this happend to anyone else. This really does have me stressed out.

[1WeekAtATime]

If you feel that way about her, then I bet other people do too. If there's a way to not name names, I think it would be best to let a higher-up know so that other people do not have to go through the same situation. There's no real way to know what management she has, but it's important that the whole system- with as much money as you're putting in- is working properly.

By the way, hi. I'm a college student who works in film as a PA and sometimes in casting and production offices. It's really important that I be able to stand for long period of time when working on a set, but right now, I am literally using a handicapped parking permit. Are you on Remicade? How is it working for you (usually?) I'm trying to decide between Remicade, Humira, and Methotrexate because I have injection site reactions with Enbrel.

[LoriASoCal]

How bad are the injection site reactions? I was told those were okay to have. That they wouldn't really affect the treatment. I used to get them they would swell like a pancake.
I was on enbrel and I believe remicade works better for both my P and PA.
That sounds like a cool job that you have. I'm a writer. It's a fairly new career for me but I'm excited about it. I'm getting more work all the time. Please ignore my writing here... one I don't try and two my copy editors refuse to go on location with me:)

[LoriASoCal]

Okay, my pain isn't really going away like it should after this infusion. I'm exhausted, achey and just plain depressed because of what happened. I'm going to see my therapist monday because she always has a clear head and helps me sort out how to deal with affronting issues without letting my emotions suffer. I'm so mad at this nurse after having a couple days to think about it.
Usually, within 2 days I am doing great. Perhaps it's because I also don't have my NSAIDS to rely on. Which I'll get tomorrow. But now also a couple of patches of P that usually pop up right before my infusion are not going away.
I just feel like how dare she trivialize my situation by giving me my less than prescribed does. How dare she cheat me out of my health in order to cover up her mistake. I know this woman enough to know that she's suffering guilt inside because of what she did to me and possibly has been doing to others because of her bad remicade booking/ disorganization but what can I do. My whole cocktail of medicine just manages to get me through without room to spare generally.
I feel so let down.

[RichJ]

hi lori,
im so sorry to here what happen and hope you can get your pain to go away. i wish you the best my friend

try and have a good day all

richard

[slowe]

I know how you feel. My pain has been out of control for the last 6 months and my doctors won't give me anything for the pain. Unfortunately, I'm severely limited as to which doctor I can see because I have a local health plan for people with low income. Everyday when I wake up, I just lay in bed crying because of the pain. Some days the pain is so intense that I just want to curl up in a ball and die. The only things that keep me going are my dh and my boys. Oh yeah, my depression has kicked in big time. :o

[pitzerja]

I am sorry you are so miserable right now. I found myself doing "breathing" exercises yesterday to deal with the pain in my legs.

Quite frankly... IT SUCKS!!!

Gentle hugs and I hope you can get things worked out with the meds and your schedule to feel better.

[LoriASoCal]

Hi easy does it.
I so know that feeling of not being able to lift a glass. It's one of the things that makes me feel really depressed.

[Had-It-Forever]

Okay, my pain isn't really going away like it should after this infusion. I'm exhausted, achey and just plain depressed because of what happened. I'm going to see my therapist monday because she always has a clear head and helps me sort out how to deal with affronting issues without letting my emotions suffer. I'm so mad at this nurse after having a couple days to think about it.
Usually, within 2 days I am doing great. Perhaps it's because I also don't have my NSAIDS to rely on. Which I'll get tomorrow. But now also a couple of patches of P that usually pop up right before my infusion are not going away.
I just feel like how dare she trivialize my situation by giving me my less than prescribed does. How dare she cheat me out of my health in order to cover up her mistake. I know this woman enough to know that she's suffering guilt inside because of what she did to me and possibly has been doing to others because of her bad remicade booking/ disorganization but what can I do. My whole cocktail of medicine just manages to get me through without room to spare generally.
I feel so let down.

I have had this trouble in the past regarding a different kind of situation. It had to do with medications and appointments, but I was not affected with pain like you have been. I was just "put off". I told the woman straight to her face how I felt. Pretty much what you said here in your posts, I relayed to her face. It is your body, your aches, your pains, your money. Her job is to help YOU and she should be reminded of that. It may sound harsh, but hey, PA and P is a harsh life to live. Good luck to you, I know how you must feel. The pain of PA is like no other, I have had to deal with it forever. For her disorgainization to cause you pain is just intolerable. My thoughts are with you.

[nosirnotme]

I'm so sorry to hear about everyone's pains. Even though it seems like most days suck for me with the arthritis, I try to keep a good attitude. I tell myself that this has to get better. I hope it's the next infusion or the next treatment, whatever it may be in the future.

The harder thing for me to deal with than the pain is the frustration of not being able to do things I want to do. Last week, I went to the store to buy some new bed sheets because we were getting new mattresses delivered. I was in so much pain even before I got to the store. I walked down two aisles, and then could not walk anymore. Just seeing where I wanted to go and not being able to go was very difficult to deal with. There were about 4 more aisles to go through. It doesn't sound like much but it felt like the world! I came home very upset.

But, I'm determined! I went back two days later when I was feeling better and got some sheets and a blanket! Woohoo!

I've had a few times where I drove to the grocery store, got out of the car and realized this isn't working and had to go back home. There are days where I absolutely need pain medication to be able to function. But, again I feel very limited with that because I can't drive with it.

Does anyone else have a hard time with the limitations of doing things because of the pain?

[LoriASoCal]

Absolutely. As easydoesit mentioned in an earlier post about- not being able to lift a glass to drink from it. I find that one really hard to take. There are many mornings that the brush doesn't even get through my hair properly because it hurts too much. I do rely on stronger pain medication to get me through at times.
A trip to Costco equals half a vicoden. lol.
And I so badly wanted to go to Ikea to make sure DBF got the right shelves that I went and found myself sitting in a chair or on a box in almost every aisle...just like you. And I'm in good shape otherwise. Some days are just like that.

[ouchyk]

I break glasses when I lift them sometimes, as in drop them. :o ..so on those days I use a straw. For a while I couldn't turn a key so I got a key grip, it helped a lil. There are manipulatives that we can use to help us thru. I find braces are helpful too...

I try to stay away from superstores or enlist help as there is no way I can shop & carry grocieries in. I feel like having my husband push me around in the cart sometimes lol...also have a friend who lives right in the city who walks to the store daily to get her needs. I know that's not an option for everyone.

I do what I can, when I can and if I can't, I can't and I no longer worry about it. I try to focus on what I can do....it does take some adjustments.

And when the pain is bad then I eat a pain medication...they work well.

we'll be okay.

Karen

[LoriASoCal]

Yep, we will be okay. I'm not so sure I'll ever exactly be used to it though:)

[encyclopedia]

I can relate to what everyone is saying, I have PA too, but so far I have resisted the Enbrel and have not been to my rheumy in 15 years because he was so insisting that I take sulfasalazine and having had a bad reaction to it I did not want to take it. Then I went to sunny Kuwait and did not get any PA there (could it be the vitamin D from the sun?). Now I am back in a less sunny country, and I am trying BJ's vit D plus low dose of ibuprufen (Advil) (see that thread) to see if the PA and the skin improves. I just started this and had first to wean myself off large doses of ibuprufen, so I have a lot of pain right now, especially in my left wrist. I 'll let you know how it goes.

[jperng]

Hello Lori,

Sorry to hear you are in such pain, I have been dealing with the same issue for 15 years now. Sometimes the pain just too much and I don't know how many times I gone to bed and praying I can wake up in the morning and have a brand new body that is free of this horrible disease.

Before enbrel and humira I was taking Chinese herbs, which didn't really do much for me at all. However in the same office the herbal doctor also performs acupuncture, First couple time I tried it, it did release some pain and stiffness in my arms and fingers but does not always work on a consistant base. I would say about 60% of the time I go I see some sort of improvment from pain and movement. Sometimes I would be pain free for month and sometimes it will only ease up the pain a little bit. However it is something you can consider trying out. Hope you find some relief soon.

[LoriASoCal]

The short version of this very long post is I'm bummed out and hurting.

If you are crazy and bored out of your mind read on:


Well, just to make sure I had even more proof that I only got three vials instead of 4, I called authorizations and asked when the nurse applied for authorization for my remicade last month. She applied for it on sept 4th... my infusion was the 6th and so it was not approved in time for my infusion meaning she certainly didn't have my medicine. So she certainly used someone elses medicine on me and it most likely was the recpt on the counter for 3 vials from some other poor schmuck.

I did call and speak to my doctor and told him that I thought I got shorted but didn't go so far as to out right accuse the nurse. I told him I just wanted to make sure that from now on it was my medicine I was getting and that I prefer the vials not be opened until I got there. He made very little comment except that he would look into it.

So why am I writing? Because I'm in pain and my infusion isn't until the 10th and ever day is likely to be a little more painful until my next infusion and I don't know how this is going to figure into the antibody thing. So I'm having anxiety over this thing as well. And even my P is flaring on my scalp and knees a little more than it has in the last 2 years.

And as much as I like that nurse on a personal level ... I'm starting feel very p.o.'d that she would mess with my health this way. and where is my 600.00 vial of medicine that should be in my arm? And how is my medical treatment going to turn out now in this, the only rhuematologist my medical group has to offer. blah, blah, blah... I did give you a way out of reading this...lol



Well, by some mix up-I only got 3 vials instead of 4 this time. And I don't feel like it's working as good either. I'm so bummed. I'm worried how this is going to affect my next five weeks. Of course I was flat-out lied to in this 'mix up' . I'm wondering what steps to take to insure it doesn't happen again. And I kind of feel like it all depends on if I manage to get through it okay.

If I do, I'll just confront the person and give them some rules to live by when infusing me. If it becomes this huge problem and I get really sick as a result, I know I'm going to be angry. I don't want to get anyone fired but I have enough goods on this person, provided someone was willing to listen to me, to have that happen. Anyway, it's too much to go into here but I'm wondering if anyone else has had their medicine mismanaged.
It's horrible to barely feel as though you have control because you have to take medicine to begin with but when someone's disorganization causes you to lose a whole vial of liquid that should be in your blood stream that the insurance is charged over $600.00 dollars for ( yes my 4 vials is over 2400 dollars every 5 weeks)And things like this have happend before- accept that she was always able to 'borrow someone elses medicine so it had a zero negative impact on me but clearly showed her disorganization- oh and it's always someone elses fault not hers.
Here's the bad part she's a nice person. She's a pretty good nurse.She's learned to get me on one stick which believe me is NOT easy. And we chit chat about my grandchildren and her children.... But this organization problem she has has caused me to suffer. First with the enbrel -that started with her, not turning the paper work in in time. She would blame the insurance company but after following the paper trail each and everytime month after month(because my insurance company authorizes by the month) the fault always was in her lap. Then since I began remicade I can't tell you how many times she's rescheduled my appt. by a day or two because my medicine hadn't arrived yet. So then my whole week and all my appts and my work schedule has to change to suit her. Initially I complained to the doctor but she was able to snow him.
I'm sure I'm not the only one with these issues with her- if she's disorganized I'm sure it reflects in her other patients and work. Basically, I really like this gal. But her lack of work ethics-not turning paper work in time ( and now adding lies on top of that)has caused me to suffer with enbrel chronically being late. Suffer changing my schedules all the time. And now, actually impacted my healthcare.
My heart thinks ,but she has children and she's so nice 'but ''my mind says, you wouldn't tolerate this from someone else. And it's serious. it's not some small slight.' A whole 600.00 vial of medicine did not go into my viens and I already feel that it isn't working as well because of it.
I want to handle this diplomatically. A) I don't want to see her fired... B) I want to be taken seriously C) and above all I want to have the behaviour stop so that I can get good medicial care and so that I don't have to stress as to whether or not that is going to happen everytime.

Has anything like this happend to anyone else. This really does have me stressed out.

[ouchyk]

I'm sorry that happend Lori.

Hope that you feel better soon.

Karen

[SandraJean]

So sorry to hear all this Lori. I hope you can feel better soon.

Take care,

Sandy

[LoriASoCal]

Thanks everyone,

I was just reading over all your posts, again. Thank you for sharing with me about your pain and for your words of care. I'm sorry that any of us have to go through this.

[DebraO]

The biggest source of pain for me is bursitis in both my hips (mostly when I am trying to sleep). I hear others on this site mentioning bursitis. How is it related to PA? Or is it? I have also been told by my accupuncturist that bursitis is a "secondary" condition. Any thoughts?

[AnnieB]

I had hip pain which bothered me at night when I would sleep on my side. It has cleared up since i started taking Humira, so I figure it was part of the PA condition.

"Stress or inflammation from other conditions, such as rheumatoid arthritis, gout, psoriatic arthritis, thyroid disorders, or unusual medication reactions may also increase a person's risk [for bursitis]."

http://www.webmd.com/osteoarthritis/guide/arthritis-bursitis

I guess you could call it a secondary condition since it is a result of having PA. like when you get tendonitis from PA. But the bottom line is that if you calm down the inflammatory response, the pain and swelling of the bursa should subside--unless there is some other/an additional cause.

[Ihurt]

Could still kick the nurses A$$,.

Remember what happened with my infusions Lori? The nurses son was sick? My infusions kept getting spread out because of her schedule and the fact that they didn't have anyone to replace her?

I understood she had a handicapped child, but what I couldn't understand was THE PAIN I WAS IN! My infusions got pushed back by almost 4 weeks when everything was said and done. By the time I did get the infusion she didn't have all 4 bottles I only got three...but my insurance was charged with 4.

When I complained the rest of the office took it personally. I almost had to change my rheumy WHICH I WAS TERRIFIED OF. I was somehow labeled at the front desk and treated like an "oddball" patient. it got to the point where the doctor had to speak with his staff, and the one at the front desk who gave me the hard time left. Now....the whole situation is reversed.

The next infusion, I got 4 vials and then they tried to catch me up by moving the infusion periods closer. All this while I was going through the stress of being forced out of my job because I caught my boss committing fraud! The fear and stress that consumed me at the time made my body race and no amount of Remicade was going to fix it then, especially when my schedule and dosage was so far behind! Like I said I could still kick --------. It's almost two years later and Im still furious over it. I think once this happens to us, we never trust them again.

Being on Remicade was the best feeling I had had in years. I felt like twenty again. I could do things I was not capable of in years. Shortly after all this is when the opthamologist found the swollen optical nerve and I was taken off completely. ]I have never known relief since then.[/[/B]U]

I can completely ...[U]and I do mean completely understand how you feel. How dare she?????? How dare she?????? Your infusions are a LIFELINE...one that she would never never understand unless she needed it herself. The ingnorance of some people is always at the detriment of others isn't it?

Being a nurse I can tell you that she's probably crap scared of you right now. I would let her know in no uncertain terms that she caused you great deals of pain, disrupted your life and that you have it documented. That IF she ever does this ever again, you will have her license. I don't care what state your in....it is illegal to administer one patient's meds to another...no matter what the circumstances. You could call the state Nursing Board. They will investigate. If and when they do, I promise you, she will NEVER do this again... They will find it if she gave you someone elses dosage and didn't receive yours until a few days later.

Me personally......I'd have to get my pound of flesh from her now.

The doc? He will never admit to you what he finds after "looking into it. He's liable for any mistake that she makes in his office (unless I read your post wrong you go to his office). And even if not....he's a healthcare professional, he won't turn on her.

I would really get her by keeping a pain diary...things I couldn't do because of the dosage not being right. The pain levels and not being able to sleep....disrupting your life. I'd give her and the doc a copy. The doc will know your right immediately when he reads it....he knows what the dosages will result in, and the lack thereof. If you let them know you are documenting....you can guarantee that this will never ever again happen to you, and maybe never happen to another patient either.

I hope you feel better really soon. Believe me the days will get shorter IF YOU DON'T count them. Stay in the moment if you can. Your next infusion will be here before you know it. Hang in there!

Elaine

[ouchyk]

The biggest source of pain for me is bursitis in both my hips (mostly when I am trying to sleep). I hear others on this site mentioning bursitis. How is it related to PA? Or is it? I have also been told by my accupuncturist that bursitis is a "secondary" condition. Any thoughts?

I get hip bursitis often. Cortisone injections kick it right out. Have you seen a rheumatologist for consultation?

I find that heat/ice rotation is helpful too..but cortisone by far works the best.

Karen

[RichJ]

The biggest source of pain for me is bursitis in both my hips (mostly when I am trying to sleep). I hear others on this site mentioning bursitis. How is it related to PA? Or is it? I have also been told by my accupuncturist that bursitis is a "secondary" condition. Any thoughts?
hi debrao,
sorry i can't help much but welcome to the p family. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you.

have a good day all

richard

[emory241]

i can't figure our how to do my own post. so sorry for stomping on yours. i need help very badly. i am a hairdresser and i have scalp p. i have been extrememly fortunate in that i have only ever had a few patches here and there my whole life. anyway, i have a client who has the worst case i have ever seen a few months back. i was very upset initially becuase she was very rude to me. she never even tried to talk to me about her condition. it is my right as a hairdresser to ask questions and protect myself as well. when i asked her ,"i assume you have p" her response was so blaze'. now, i understand this is embarassing i've been there. however, her scalp was completley flared!! she even had some bleeding. ok so here's my question. shes on my book next week and i dont know if i can tell her no. i really dont want to hurt her feeling. please give me some helpful suggestions becuase if she has pus or is bleeding that could give herself or me any numerous types of infections. and she acted like she didnt even care because its not contagious. i have quite a few clients with p and im fine with them as any professional should be. but, i need some advice on this one!!! thx

[RichJ]

hi emory241,
i hope i say it right. go to the side and in the top left is a box that say's new thread or some thing. click on it and you can start a thread. i have p in my hair to and i hate. i hope it's helps some

try and have a good night all

richard

[LoriASoCal]

My infusion is only 9 days away but I woke up this morning in a whole new world of pain. I'm behind the eight ball on more projects than I can count. And I'm tired from poor sleep. My usual arsenal and believe me it's nuclear, is just not touching the pain and I'm wondering if I need to visit the pain management doctor for cortisone shots even though he said I couldn't come back for a while but it's been awhile so I think I'll check to see if I can.
How do I find the energy for that when I'm already stressed out about all the I have to do. More appts is the last thing I need. It's got me feeling oh so down today.

[Ihurt]

My infusion is only 9 days away but I woke up this morning in a whole new world of pain. I'm behind the eight ball on more projects than I can count. And I'm tired from poor sleep. My usual arsenal and believe me it's nuclear, is just not touching the pain and I'm wondering if I need to visit the pain management doctor for cortisone shots even though he said I couldn't come back for a while but it's been awhile so I think I'll check to see if I can.
How do I find the energy for that when I'm already stressed out about all the I have to do. More appts is the last thing I need. It's got me feeling oh so down today.


I want to strangle that nurse lol. You should not be feeling this way right now. Pain Management? By the time you get an appointment it will be time for your infusion again...isn't that always the way. How bout hot soaks? Rice socks? Wish I could mail you my hot tub that would do it. You and I seem to be still in oue own little hell.

Had MXT Sat, and Humira Sunday. Felt a litte bit better...ONE DAY was all. Right now as Im typing this to you Im using my left index finger...my right fingers are so swollen and they hurt bad. Even just to hold them hurts. Pain started right back up last night out of the blue...while I was sitting reading in my chair. Felt that flu like feeling WASHING right over me. Now today, swelling and pain. I don't understand it, but like you Im too tired to try..I need relief., and so do you.

So we are back to basics...what can be done in the place of the meds? And about the list of things we need to do? Hell....we won't see that until we are back on track, no sense in stressing over it, it ain't gonna happen. I had enough strength to pick my daughter up from tutoring because there wasn't anyone else here to do it. Threw in a ham (boiling in pot)-my daughter in law cut the potatoes and cabbage..my hands wouldn't and couldn't. THAT'S ALL SHE wrote for me today. Im lucky if I have enough strength left to even eat. One vicodin and in the chair after I soak in some dead sea salts.....it's about all that can be done. I guess meds aren't working yet. In your case, you don't have any...and that sucks.

Hang in there Lori, I know 9 days seems like an eternity and in our cases probably is but think of the things you can do to lessen the pain without the meds albeit temporary measures.

Elaine

[mamaooch]

I had my Remicade infusion (every 4 wks) last Thursday, MTX on Sunday. I did not sleep at all last night. My ribs hurt so bad. The only pain med I have is Ultram, and it is not touching it. Since I came home from work I have had a heating pad on my ribs. I feel like I am in a vice. I need to call the Rhemy tomorrow because this sucks.

Lori and Elaine,
I am sorry you are in so much pain. I can relate.

Take Care,
Cindy

[pgerpup]

I hate to be a different kind of pain, but I'd really like to share this with someone. I am having the best week I've had in about two years! My left hip twinges a little, but for the most part, my stiffness has eased off a great deal! I'm so excited, but so scared to write this down. Just as soon as I hit "submit" I will probably get up from this chair and hardly be able to walk. :eek: I hope I'm wrong! I've been on Enbrel now for six weeks this time. It's going pretty good so far. I haven't had a toothache anyway. (Scared again!)

Well, just wanted to tell someone. I hope I haven't made anyone angry. Thanks for listening.

Fay

[LoriASoCal]

Why would that make anyone angry? I'm always so happy to hear when someone is finding relief. It's very common upon remission to wonder with some fear and apprehension of the other shoe is going to drop.

Really happy for you Fay.

Hope I don't make people angry by talking about things that aren't going well with me.

[LoriASoCal]

Cindy- Sorry you are having a rough time of it. Perhaps it's time to up the dose? I hate to say this but make sure you are getting all your medicine. I don't want to raise questions about the trust worthyness of the doctors or infusion nurses and centers but from now on if I don't see all my vials opened in front of me and injected into the bag, I'm going to assume the worst.

That is the reason my medicine barely worked this time. I was shorted a whole vial. I'm not ever going to have to guess regarding that issue again. I know it is probably not likely that this happened to you but if it happened to me than it's possible it could happen to any of us.

With vials costing more than $600.00 dollars each there is reason to 'see it go in your arm.' ...it's more expensive than most illegal drugs.

[Ihurt]

I hate to be a different kind of pain, but I'd really like to share this with someone. I am having the best week I've had in about two years! My left hip twinges a little, but for the most part, my stiffness has eased off a great deal! I'm so excited, but so scared to write this down. Just as soon as I hit "submit" I will probably get up from this chair and hardly be able to walk. :eek: I hope I'm wrong! I've been on Enbrel now for six weeks this time. It's going pretty good so far. I haven't had a toothache anyway. (Scared again!)

Well, just wanted to tell someone. I hope I haven't made anyone angry. Thanks for listening.

Fay


Im so happy for you. I remember the feeling well when Remicade worked, and I loved it. It's almost like a natural high right? I hope it stays that way for you.

CINDY: I have never had the rib pain, I feel so sorry that your going through this. Is there anything else that can be done?

[peggyb]

Fay, it is good to know that someone out there is having a good week, and to everyone else...I feel your pain. No, literally...I'm feeling your pain and the pain of the world right now in my right hip. I am not on any kind of treatment right now due to the fact that money is tight and our insurance is the worst I've ever had. But for the last two weeks I've had TREMENDOUS pain in my hip, so bad that I'm having trouble walking, lifting my leg to use stairs or put it in the car, and by the time afternoon rolls around, I'm dragging my leg, limping terribly, bent over, and I'm in the worst pain ever since I got this stupid disease. Yesterday I went to see my GP, who listened to my complaints, then sent me for an x-ray and some bloodwork. Well, Miss Perky Nurse just called me, and told me in her cheeriest morning voice that all the labs were normal, including the sed rate, and if there was anything else they could do for me, I should just let them know. I burst into tears when she said that, which put her off-guard. She asked me what was wrong, and I said, "Well, you just told me my labs are fine, and I'm telling you that I'm in some severe pain. What am I going to do?" She put me on hold, then came back and said, "The doctor says if you're in pain, you should go to the emergency room." Well, I started wailing even harder. She asked what was wrong and I said, "She wants me to go to the ER?? I've been dealing with this pain nonstop for two weeks, I just saw her yesterday and NOW she wants me to go to the ER??:?" Again, Miss Perky put me on hold. Then the nurse practicitioner (who was actually the one I say yesterday) got on the phone, and said that the results from my x-ray said I had degenerative disease, but didn't say whether it was mild, moderate, or severe, and if I would go to the ER they'd give me a shot in the hip. I said, "I KNOW I have 'degenerative disease' in that hip...that's why it's been hurting for two weeks! And just going to the ER is the answer????" She then offered to call me in some Lortab and make me an appointment with an orthopedist.

See...this is why I don't go to the doctor. At first they were just ready to tell me that everything was fine and that's the end of that. I don't have the money to mess about with doctors and nurse practioners and specialists who ignore your pain and send you on your way. I know I should be seeing a rheumatologist, and probably receiving a biologic, but I just can't, and I can't deal with the avalanche of paperwork and whatnot that it takes to get financial assistance. Every time I've tried to get financial assistance for anything since my husband lost his job, I've been turned down, because "you have too much money in the bank." I saved for years for a rainy day, and now people tell me to put my money in someone else's name or put it under the mattress!!

So I have too much money in the bank, not enough to pay for doctors to run me around, and I'm in horrible pain. WHAT THE HELL DO I DO NOW????????? Seriously, I can't think clearly, I need someone to tell me what the hell I'm supposed to do now!!! I'm going to go cry now until my nose bleeds...HEY! The office just called back and told me they made an appointment for me with an orthopedist on the 22nd of this month. If he doesn't see anything wrong, I'm going to have my best friend run over me with a truck.

[LoriASoCal]

Peggy,

Wow, I'm so sorry you got treated like that. Getting the ol' shuffle-roo is the pits and that is just how some Drs. and staff handle situations they'd rather not handle. There are many doctors that care nothing about what the patient is telling them and will only consider what is in a lab report.

In many cases emergency services can be cheaper and faster than seeing a specialist for getting a cortisone shot and most doctors offices are not set up for giving cortisone. I have to go to a pain management doctor for mine. I know that with my insurance I have a co-pay but if I go to the ER- it's covered. So maybe that was their rationale but regardless they were rude, just plain rude.

It's very difficult to get quality care and sometimes it seems like a full time job to me but without working and insisting on what you need and sticking to the plan and following through with the endless phones calls to 'get her done'. ... it just doesn't get done and that sets us up for even more trouble.

I wish I had more advice but I'm not thinking too clearly myself these days.


Fay, it is good to know that someone out there is having a good week, and to everyone else...I feel your pain. No, literally...I'm feeling your pain and the pain of the world right now in my right hip. I am not on any kind of treatment right now due to the fact that money is tight and our insurance is the worst I've ever had. But for the last two weeks I've had TREMENDOUS pain in my hip, so bad that I'm having trouble walking, lifting my leg to use stairs or put it in the car, and by the time afternoon rolls around, I'm dragging my leg, limping terribly, bent over, and I'm in the worst pain ever since I got this stupid disease. Yesterday I went to see my GP, who listened to my complaints, then sent me for an x-ray and some bloodwork. Well, Miss Perky Nurse just called me, and told me in her cheeriest morning voice that all the labs were normal, including the sed rate, and if there was anything else they could do for me, I should just let them know. I burst into tears when she said that, which put her off-guard. She asked me what was wrong, and I said, "Well, you just told me my labs are fine, and I'm telling you that I'm in some severe pain. What am I going to do?" She put me on hold, then came back and said, "The doctor says if you're in pain, you should go to the emergency room." Well, I started wailing even harder. She asked what was wrong and I said, "She wants me to go to the ER?? I've been dealing with this pain nonstop for two weeks, I just saw her yesterday and NOW she wants me to go to the ER??:?" Again, Miss Perky put me on hold. Then the nurse practicitioner (who was actually the one I say yesterday) got on the phone, and said that the results from my x-ray said I had degenerative disease, but didn't say whether it was mild, moderate, or severe, and if I would go to the ER they'd give me a shot in the hip. I said, "I KNOW I have 'degenerative disease' in that hip...that's why it's been hurting for two weeks! And just going to the ER is the answer????" She then offered to call me in some Lortab and make me an appointment with an orthopedist.

See...this is why I don't go to the doctor. At first they were just ready to tell me that everything was fine and that's the end of that. I don't have the money to mess about with doctors and nurse practioners and specialists who ignore your pain and send you on your way. I know I should be seeing a rheumatologist, and probably receiving a biologic, but I just can't, and I can't deal with the avalanche of paperwork and whatnot that it takes to get financial assistance. Every time I've tried to get financial assistance for anything since my husband lost his job, I've been turned down, because "you have too much money in the bank." I saved for years for a rainy day, and now people tell me to put my money in someone else's name or put it under the mattress!!

So I have too much money in the bank, not enough to pay for doctors to run me around, and I'm in horrible pain. WHAT THE HELL DO I DO NOW????????? Seriously, I can't think clearly, I need someone to tell me what the hell I'm supposed to do now!!! I'm going to go cry now until my nose bleeds...HEY! The office just called back and told me they made an appointment for me with an orthopedist on the 22nd of this month. If he doesn't see anything wrong, I'm going to have my best friend run over me with a truck.

[mamaooch]

Emailed my rhemy today and he called me back tonight. Told me to take Aleve (2 every 12 hours) to get me through the flare. I guess the only way I can get rid of this extreme pain is to ride it out. This is not good since I had my Remicade infusion last Thursday. I give up.....

[LoriASoCal]

Is two aleve going to do it? Can you take something stronger? I'm just not sure how people can get by on two aleve with so much pain. Am I a big wuss? I hate barely being able to open a door today or climb a flight of stairs. I haven't brushed my hair today simply because raising my arm that high is too painful and borders on mechanically impossible. I stuck it in a ratty old scrunchie and away I went.

I am so not into suffering for the sake of avoiding stronger medicine anymore. I think pain is undertreated and causes loss of: employment, quality of life and sanity at times. I know for me it's caused all 3 more than once.

I'm in a lot of pain right now and I think if my doctor told me to take two aspirin and call him in the morning- I'd probably blast him with a bunch of profanities.

Am I being over sensitive to what I'm reading or is this a contest for who's doctor is the most feeble minded? When are you seeing him? Please don't give up- ride his butt until you get some real relief.

I'm really sorry if I sound like a biatch.



Emailed my rhemy today and he called me back tonight. Told me to take Aleve (2 every 12 hours) to get me through the flare. I guess the only way I can get rid of this extreme pain is to ride it out. This is not good since I had my Remicade infusion last Thursday. I give up.....

[pgerpup]

Oh Peggy!

I'm so sorry! I wish there was something I could do to help. It's so frustrating that you can't get the docs to pay attention unless you are sobbing your heart out. You shouldn't have to beg to be taken care of. What is wrong with doctors today? I hope things go well with the ortho. Keep us posted.

Cindy! Aleve? Didn't they even want to give you prescription strength naprosin? I know you probably don't want to take meds that might be addictive, but it seems like you need something stronger then Aleve. I'm so sorry you feel so bad.

See this is what I meant. Now I feel guilty for feeling good. I'm so sad everyone is feeling so much pain. Hang in there, don't give up. The next best thing has to be around the corner!

Love you guys,
Fay

[mamaooch]

I explained to the Doc how much pain I was in, but all he offered was either prednisone (can't stand the side effects or Aleve), he has NEVER given me any pain med except the non-narcotic Ultram (like eating M & M's). I am not concerned with getting on something stronger (no addictive personality here), but I am not even given the chance to try. Work is gonna suck tomorrow. This is a huge flare....last one I had was at least 6 months ago and that is when my infusions got moved up to every 4 weeks. what am I missing here?

Take Care All,
Cindy

[ouchyk]

Peggy, I agree don't rule out going to the ER to get the pain relief that you need.

cindy that might be an idea for you too...aleve? :( geesh.

Regarding pain medications. Less than 1% of those taking them for chronic pain do not abuse them or become addicted in the sense that they take them for shits and giggles. I don't understand dr's who don't rx meds that are needed and warranted. Not sure I would be sane unless I had meds to take when the pain is overwhelming.

Fay, please don't feel guilty. Everyone is happy for those who don't have pain...and my fingers are crossed that it works for a good long time!

Karen

[pgerpup]

Hi All!

I'm wondering if any of you have a pain doc in your area? We have one here in Montgomery. If a little city like MGM can have a pain doc, surely other places have them too. They use meds and PT to help patients control their pain. It's worth looking into. I'd take my X-rays and go see a pain doc if my meds were failing me.

Praying for all,
Fay

[AnnieB]

Prescription Naproxen was very helpful for me when I first had a painful rotator cuff injury. It is the same active ingredient as Aleve, but stronger. If I needed something for pain, I would not settle for a doctor who withholds pain meds. A pain clinic is a good idea if you can find one. Cortisone shots are temporary relief, but they can really make life way more tolerable for a while. Cindy: Did you doc even give you a reason why he won't prescribe something for the pain?

[peggyb]

Thank you, everyone, for your concern...it really does mean a lot to me. The doctor's office called me again this morning...to once again tell me I didn't have any fractures, but I do have degenerative disease. I told the person who called that I was told that yesterday, and besides, I already knew I had arthritis. She seemed flummuxed. Then she said, "Well, hey, at least it's not a fracture!"

The GP made me an appointment with an orthopedist. I don't count on them to know what's best for me...I should just go there for headaches and the flu. Should I go to see this orthopedist? (He is really cute.:)) Or should I try to get back in with the rheumy I started to see two years ago, knowing it will probably take months to get back in? I can't live with this pain for months. What would you do if you were me?

Thanks for being here to listen to me.

[LoriASoCal]

I think if you can you should see a rhuemy as well. Three months is going to go by whether you make the appointment or not.

[Ihurt]

Peggy, what you are describing happened to me two years ago. It sounds like spondylitis. In my case I had severe DJD (degenerative disc disease). I had bent over and heard a crack, but then could not get up, and all I was trying to do was help my husband put the vacuum cover back on the vacuum.

Turned out I had fractured the disc-L5, and the little gel sack inside of it (pulposis) which acts as our shock absorber leaked out. Imagine trying to even walk without a shock absorber! Imagine what your car is like without shocks...bang, bang and more bang. What we sometimes think is hip pain is really S1 joints. I was in complete agony...pain like I never felt before, and never want to feel again.

It wasn't until I let my boss (WHO KNEW HE WAS PRACTICING FRAUD AT THE TIME), give me steroid injections. He was a pain management specialist. Brilliant in medicine, corrupt as a jaybird in business. I had the shot by 1 pm that afternoon, went home to sleep off the anesthesia, and by ten oclock I could put my feet on the floor and walk again. I hadn't been able to walk for two weeks, couldn't walk, couldn't stand, couldn't sit, and laying was difficult.

Now I know your pain is the hip, but it could be related to the S1 joint which is not uncommon for us. S1's are bilateral, and are not far from L5.

The steroid injection was the best medicine for me. Im sure Karen (ouchyk) will agree here. The following month it acted up a little more, so he did a second injection. I have been ok since then. I have the usual back pain, but nothing like that pain in 2005....I would rather have had three more C-sections in sucession than have that pain back!

I hope you feel better really soon. Try to see a pain management doc.

[pgerpup]

PeggyB, I would see the ortho while I wait for to get in to see the rheumy. I think the ortho doc will be able to help with some meds and some PT if that is possible. There is nothing wrong with seeing both. They all have their specialties, but if one can help, let him/her!

Don't rule out the Pain doctor either. If you are able to get the pain under control you will be able to move and moving is good for your joints. Don't let yourself get discouraged. I know that doctors get frustrated when they can't fix our problems, but that doesn't mean we should throw in the towel. So, if it were me, I'd see the ortho, make an appointment with a rheumy, and look into finding a pain management doc.

Good luck and keep us posted!

Fay

[docmks]

Hi all,

I am very grateful to have this thread where we can come and talk pain with a capital P. Whether we have it at the exact moment we're writing or we're free from it but have had it severely, this seems to be the best place in town if you aren't a stranger to the really severe pain of PA.

I am so sorry Peggy and Lori that you've been in such pain. Peggyb, I think I would go to the orthopedist since that appointment is already scheduled, but I can't see how you can possibly stay in this degree of pain for so long. The main thing is to find somebody who will take your pain seriously and how well I understand how difficult that can be. It seems to be a different doc or specialist for each one of us. For some of us, it's the rheumy, for others the GP or the internist, others a pain management specialist. It gets so tiring going to docs but we have to keep trying when we feel so badly.

I am hurting especially badly tonight because I am taking this class on ornithology and for the first time in a long time sat in a chair at a table for any length of time. I am also having trouble with fatigue which goes along with pain, but it is making it hard for me to tolerate MTX. So, like a lot of us, I am sort of a vicious circle.

Knowing that there are other people out there who knows how this feels and are fighting the hard fight alongside does help. And it certainly helps to have a place to go when I feel like this.

take care all,
MK

[peggyb]

[QUOTE=ouchyk]Peggy, I agree don't rule out going to the ER to get the pain relief that you need.

Ok, so are we talking about a giant injection into the hip here? Just exactly what are we talking about here? I really do have a problem with needles, but this pain is soooooo bad...I discovered yesterday that if I stand more than 10-15 minutes at a time, the pain when I sit down is so bad it makes me cry. I'm in the worst prolonged pain of my entire life...having my son was better than this, because that pain had a beginning, a middle, and AN END. I see no end in sight for this. Docmks was right...I can't just keep going on with this torture. 20 years ago, I watched my mother scream and cry in agony over her arthritic hip...then she had a hip replacement. I had no idea...I feel guilty for not feeling more sympathy for her then...paybacks ARE hell..........

I don't see how it will be possible for me to stay in this level of pain until I see the orthopedic doctor on the 22nd. On the 2nd my gp's nurse practicitoner gave me 30 7.5 mg Vicodin, and I only take two a day...because they really don't even begin to TOUCH this pain.

Please tell me, if I go to the ER for this, what should I expect? Will they take more x-rays? Will they really DO anything about this? (I used to work at my local hospital...and my confidence in them is not very high unfortunately:() And the number one question on my mind is: HOW LONG IS THE NEEDLE AND HOW BADLY WILL THIS HURT??????

[pgerpup]

Hi PeggyB,

I don't have an answer to your question, but I don't want this thread to go too far down the list, so I thought I would bump it up. Maybe someone else will have the answer.

I'm so sorry you are still in so much pain. I hope you are able to find some relief soon. Keep posting so we know you are ok.

Fay

[LoriASoCal]

Hi Peggy,

I cut and pasted this from another site but it explains the procedure pretty well.

Hip joint injection procedure
Fluoroscopy (live x-ray) is commonly used in hip joint injections for guidance in properly targeting and placing the needle, and for avoiding nerve or other injury.

On the day of the injection, patients are advised to avoid driving and doing any strenuous activities.

The hip joint injection procedure includes the following steps:

An IV line will be started so that adequate relaxation medicine can be given, if needed.

The patient lies face down on an x-ray table and the skin over the hip is well cleaned.

The physician numbs a small area of skin with an anesthetic (a numbing medicine). The patient may feel a sting that will last for a few seconds.

The physician uses x-ray guidance (fluoroscopy) to direct a very small needle into the joint. Several drops of contrast dye are then injected to confirm that the medicine only reaches the joint.

A small mixture of anesthetic and anti-inflammatory cortisone is then slowly injected into the joint.

The injection itself only takes a few minutes, but the overall procedure will usually take between thirty and sixty minutes.After the hip joint injection procedure, the patient typically remains resting on the table for twenty to thirty minutes, and then is asked to move the area of usual discomfort to try to provoke the usual pain. Patients may or may not obtain pain relief in the first few hours after the injection, depending upon whether or not the joint that was injected is the main source of the patient’s pain. On occasion, the patient may feel numb or experience a slightly weak or odd feeling in the leg for a few hours after the injection.

The patient will discuss with the doctor any immediate relief of pain, and will then record the levels of pain relief during the next week. A pain diary is helpful to clearly inform the treating physician of the injection results and in planning future tests and/or pain management treatment, as needed.


Pain relief after ahip joint injection
Patients may notice a slight increase in pain lasting for several days as the numbing medicine wears off and the cortisone is just starting to take effect. If the area is uncomfortable in the first two to three days after the injection, applying ice or a cold pack to the general area of the injection site will typically provide pain relief and appear more beneficial than applying heat.

If the hip joint that was treated is the source of the pain, the patient may begin to notice pain relief starting two to five days after the injection. If no improvement occurs within ten days after the injection, then the patient is unlikely to gain any pain relief from the injection and further diagnostic tests may be needed to accurately diagnose the patient’s pain.

Patients may continue to take their regular medicines after the procedure, with the exception of limiting pain medicine within the first four to six hours after the injection, so that the diagnostic information obtained is accurate. Patients may be referred for physical therapy or manual therapy after the injection while the numbing medicine is effective and/or over the next several weeks while the cortisone is working.

On the day after the procedure, patients may return to their regular activities. When the pain has improved, it is advisable to start regular exercise and activities in moderation. Even if the pain relief is significant, it is still important to increase activities gradually over one to two weeks to avoid recurrence of pain.


Potential risks of hip joint injections
As with any procedure, there is a risk of complications. Possible side effects from the hip joint injection include:

Allergic reactions to the medications used

Infection (occurs in less than 1 per 15,000 injections)

Post-injection flare (joint swelling and pain several hours after the corticosteroid injection)

Depigmentation (a whitening of the skin)

Local fat atrophy (thinning of the skin)

Rupture of a tendon located in the path of the injection

[peggyb]

Gulp *swallows hard*

*blinks eyes rapidly*

*whispers* oh......my......gaahhh........

Thank you, Lori. *she says feebly*
And they would do this in the Emergency Room?

I'm screwed. No matter what happens from here on, I am sooooo screwed...fear and pain, pain and fear.....

[LoriASoCal]

With only 4 days to go until my infusion I just couldn't take it any longer and I upped my prednisone dose yesterday. That always feels like robbing Peter to pay Paul to me but at this point my down time has become a huge problem.

I'm at the end of my tether.

[peggyb]

Oh Lori, I hear you honey...may I join you on the Ship of Misery?

[LoriASoCal]

Hi Peggy,

Try not to think of it that way. Finding solutions can be difficult but we do find them and get relief. I think it depends on the hospital but most of them do have all the equipment necessary to do the job.

It's worth a try. I think seeing a rhuemy as soon as possible is important but even before you see him while waiting for the appt you can ask for a referral to a pain management clinic also.

I'm feeling better with some prednisone in me. Have you tried a medrol pack? Or other prednisone? Perhaps, the doctor you saw could call a prescription in for you. A medrol pack might set things right until you see someone.

[peggyb]

No, I haven't had any prednisone or medrol dose packs in a long time. Emergency room, orthopedist, pain management doctor, rheumy...this is beginning to sound VERY expensive, and that makes me extremely nervous....

[ouchyk]

Peggy,

You might want to put your name on the cancellation list at the rheumys and orthos.

Cortisone injections are not " that " bad and offer relief pretty quickly, you could also ask for something to make you calm during the proceedure.

Prednisone, although evil is also a god-send to those who suffer so greatly, it can kick the ***** out of PA. Your pcp or internest whoever you saw last week could rx over the phone as she/he is aware of your situation and did ask how they could help. 5-10 mgs is not a lot. I find 7.5 to work for me and it takes three days to kick in. Lori, here's hoping it will tide you over till your infusion.


Karen

[LoriASoCal]

Well, tomorrow is my infusion. I'm going in early and waiting in the infusion room to make sure my vials aren't opened before I get there.

I stayed home today. I'm not sure I can work tomorrow either.

[Ihurt]

You may need to use it on her if she does this again lol

[LoriASoCal]

Elaine-That's for sure.

[peggyb]

So Lori, how did the infusion go? Are you still getting your infusions by the same nurse who screwed them up so badly in the past? Even though you said she's a nice person, I don't know if I could continue getting my infusions from her...

Everyone, indulge me in giving you an update on my condition, whether you want to hear it or not. I'm pretty much the same...my hip hurts pretty badly and makes me cry at some point during the day everyday, but I'm learning to live with it (until I get to the doctor again on the 22nd). I figured out that if I only stand for no more than 15 minutes at a time, I can handle it a lot better. I've borrowed a cane to see if that helps at all...I didn't realize it takes time to learn to use one properly. I got myself a "grab-it" so I don't have to bend over to pick stuff up off the floor, and I can dress myself now that I've got it. It's awesome! I've been stretching and keeping as active as I possibly can without crying. I'm trying not too worry too much about what all this pain could possibly be...but I AM worried. Is this a new chapter in my life? Am I going to have to learn to live with even less mobility? Will I ever be able to dance again? I guess there's no use in going over it in my head a thousand times, until I get it checked out.

[Ihurt]

Hope you got through it ok without the stick lol

Are you feeling any better?

Im here at my sister's house. I got here yesterday after court and my sister begged for me to babysit. First time they've been out since the birth of my niece, so I said I would. Not easy with a 3 year old and two month old, but my daughter helped.

When I went to leave just about an hour ago I went into a flare. Couldn't drive. Was supposed to meet Polly today :( I feel so lousy all I want is my chair but I can't get to it.

[LoriASoCal]

Hope you got through it ok without the stick lol

Are you feeling any better?

Hi Elaine, Yes, I am feeling better it is truly amazing how fast the remicade can work. I'm a little sore today because I did way too much at the first sign of relief. I'll never learn my lesson there. I got to the infusion center half hour early and went straight to the infusion room and sat and waited. Didn't ask if I could- just did it. The nurse was surprised to see me there but she was a sweet as pie. It looked like the place had been revamped a bit. I noticed my medicine was in a large bag marked with my name on it...lol.

I guess I'll go back to calling 3 weeks before my infusion to follow the paper trail of my meds. Even though it's a big hassle each month -it's better than what I just went through. Anything is better than that. I haven't been in that much pain in a very long time. And right towards the end I was feeling extremely sick and worried I might get shingles again from the stress of being in pain. My PHN was chiming in terribly prior to the infusion. And that had made me extremely discouraged.But all is well that ends well.

Im here at my sister's house. I got here yesterday after court and my sister begged for me to babysit. First time they've been out since the birth of my niece, so I said I would. Not easy with a 3 year old and two month old, but my daughter helped.

When I went to leave just about an hour ago I went into a flare. Couldn't drive. Was supposed to meet Polly today :( I feel so lousy all I want is my chair but I can't get to it.

Oh my gosh Elaine. I know exactly what you are talking about I have 3 grandchildren. Two from my oldest daughter- a 4 year old and a 4 month old.
And I have a granddaughter from my youngest daughter- 7 months old. I usually need help when babysitting more than one of them at a time.I hope you are feeling better and finally able to go home- cause there is no place like home when you aren't feeling well.

[Ihurt]

Came home,did my MXT shot and got into the chair...I LOVE MY CHAIR. Today did my Humira shot-still stings like a b*(&((, BUT I got through it. Now Im just fatigued, but gonna sleep early tonight. Back to Jersey tomorowto see my therapist then back tmy sisters becauseI have to babysit again.

My BIL's best friend died two days ago. 43 yrs old with metastatic melanoma. He suffered and it was really sad!

My nephew is so funny. He said "Aunt Lane, you have to sleep in my big boy bed with me...so I did. Twenty mins later he tapped me on the shoulder and said "you know Aunt Lane, I think t's time for you to go to your own bed now!!!!!

He just cracks me right up! But I know I have to reserve some energy and take my meds!

[nyoki]

It is so difficult for people w/out a degenerative disease like PA, to understand the constant cycling of symptoms and side effects (of meds). Nobody wants to hear the constant litany of complaints. It can drive you crazy when you feel like you can't talk to anyone about the roving pains. My right toes are swollen and in excruciating pain...It must be Monday! Luckily I have a great rheumatologist who happens to be best friends w/ my equally great dermatologist. They always consult each other on my care. Remicade has been my saviour. I just hope I don't get hit w/ infections as a result. I was almost taken off remicade over the winter because I could not get rid of double pneumonia. I was terrified that I'd be taken off remicade. I can't remember the last time I felt this agile. I am not pain free; I take fentanyl, and percoset daily for pain and mobic for inflamation. Remicade has allowed to take less than 1/2 of what I was taking. The major improvement for me is the true dexterity and agility that I have now.

Also I have changed jobs. What I've done may not be possible for those who have had PA degenerate past a given point. I am (was) a professor and decided to take a job that was much more physical. I figured I could get paid to work-out and (because it's a "job", as opposed to going to the gym) I'd actually be required to show up. It has worked wonders for me. It forces me to get up and work through the pain 5 days a week, 3 hrs a day. I have to set the alarm 20 minutes before I have to get out of bed because I have to get my fingers and toes to move. It used to be an hour. That's progress!

Anyway, I hope e1's next day is better than their last.

[Ihurt]

Sometimes even with the bios we need pain management. Im learning this since the Humira isnt really in what I would call "full gear yet".

Your right the pain is so transient, and for no reason..no rhyme.

I was good most of the day so I have to be grateful for that, but I had to work all day on legal papers :mad: STRESS!!!!!

Later I had to go to Parent teacher night with my daughter and just walking the halls of that high school killed me, AND I used my cane.

Now tonight my left hip (always the one) is killing me. Vicodin is not touching the pain and neither is my heating pad. I even took Tylenol a little while ago. Pain is radiating fromt he hip down the leg., and Im swollen in the toes and hands again. My other meds should have made me sleep hours ago but the pain is keeping me awake so already I know tomorrow is a gonner. I have more LEGAL paper work to do, and I have to just do what I can when I can which isn't easy when the judge sets down a case management timetable. More :rolleyes: stress! You see she's a perfect example of someone not able to understand the limitations of this disease!

And your right, it's difficult for people to understand if they don't suffer from it. I too am petrified of infections, and I ended up in the hospital in March with Pneumonia. Now the news is reporting that there's some superbug going around the schools and apparently it's being picked up in the gymnasiums. I had that proverbial talk again with my now 15 yr old about washing her hands constantly.

I wonder when the Humira will kickin or if it's already doing it's job, it's hard to tell because I only feel better for about a day and a half a week now. As you said, I guess that's progress.

Im glad your making some progress though, and the excersize is really good for us. Keep up the good work and maybe you will be able to decrease your meds somemore.

Weather kicks my butt and tonight the fog is thick in these mountains and the dampness is in the air so I think that' a contributing factor.

Take good care of yourself and I wish you lots of pain free day AND NIGHTS!

Elaine

[nyoki]

The week-end is always hard for me. I'm exhausted from a week of hard physical work (even though it helps the pain and mobility). I look forward to having a couple of days off, but the pain hits quickly. Toes, fingers and right hip are always the first to let me know that all those pain meds only mask the pain. I'm not looking forward to winter. As a matter of fact I'm terrified of how I'm going to feel when it gets cold again. I'm not sure I'll be able to maintain such a physical job once it gets really cold. On top of everything else I've got bruises all up and down my arms and some on my legs, probably a result of prednisone and remicade. My platelet count dropped to 108 and my rheum. said if it dropped below 100 he would take me off the remicade (grrrrrrrr). I even had one woman lean into me and whisper "You don't have to put up w/ it you know...this county has a CASA house." I had to go home and look up CASA and found out it's for abused women! I'm not sure if I should laugh or cry. I wonder how many people plan their lives around the pain they think they'll have to deal w/ in the future. Ah well the future will be...


ego sum NON meus poena!

[peggyb]

Hello folks...and let me say hi nyoki, nice to have you aboard...

I've had one hell of a day...terrible pain in the right hip and leg...I cried a lot and my husband made me call my dr.'s office because I didn't have enough hydrocodone to make it until my appointment on Monday...they called later in the afternoon and said if I could make it to their office by 3:30, they'd give me a shot in the hip. Well, that set off some alarm bells in my head. I was there a week and a half ago, and no one ever offered me a shot then; in fact, when they called to give me my lab report (all normal, even the sed rate), they told me if I was in too much pain I should go to the ER. So NOW they can give me a shot and help me? I was extremely skeptical....I didn't have anyone to go with me, and I'm so afraid of this shot...so I didn't go. I figured I've lived with it for almost a month, I can wait a few more days. I need to be more careful about how long I stand or walk--I was standing too long this morning and that's what caused the agony. I know, some of you who are reading this are probably thinking, what a huge coward, she can't be in that much pain if she turned down a shot....well, that may be, but I just don't trust doctors to do the right thing anymore. My husband said the office didn't say it was a cortisone shot, he said it sounded like "toradol" or something like that. I'm also so nervous about paying for doctor, lab, and pharmacy bills....Christmas is coming...the goose is getting fat....

LoriASoCal, Ihurt, nyoki, and everybody else...here's to better, pain-free days ahead for all of us...

[AnnieB]

This is what they were talking about:

http://www.medicinenet.com/ketorolac-injection/article.htm

[Ihurt]

I wish I had a magic wand to wave over that hip for you. This s*cks and we all know it., we just have to continue to try to sustain each other. Each day is a new day and some are not filled with pain.

I gert shots in my knees, but I get kenalog. It' helps a great deal and the shot doesn't really hurt that much because he freezes the area first before injecting. Something to thnk about, but I can understnad your hesitance.

Wish I lived closer I would go with you!


YES, here's to better pain free days. I know mine are coming when the stress level goes down...has to!

hang in there, Im pulling for ya.

Elaine

[Mummy]

Lori,

I am glad your last infusion went well.

I, as a retired nurse, feel I must make a few points here.

As posted earlier, the nurse is licensed and has to work under a doctor. For her to have made those medication mistakes with not only your medicines but other peoples is just unbelievable. I have to wonder if this is how this office has been doing things for some time or if there is just an issue with the nurse. I can't imagine if the nurse is this poor a planner that it hasn't caused other patients problems. This casual attitude disturbs me on all levels.

I hope you will consider reporting this unless all the problems are solved. The chances are not worth taking when it can mean a persons life. People deserve to get the medication they are ordered.

I want to say to everyone if you have any doubts about what you are given in a health care setting....ask and ask to be shown. Professionals should never get upset about being questioned.

[pgerpup]

Hello everyone! I just wanted to pop in and say I hope everyone has a great pain-free weekend! I might not be around much, I hope to go over to my daughter's house on Saturday. I haven't seen my grandsons in a month! :eek: So I will chat with everyone when I settle on Sunday.

Love you guys!
Fay

P.S. The storms caused a nasty flare in my left hip. I was miserable last night and I don't take another Enbrel shot until Sunday :( Hope I make it that long!

[nyoki]

Hope you make it to Sunday. With this weather and still 1 week to go for my remicade infusion, I'm counting on pain meds to bring me through. I'm having e1 over to my house for Thanksgiving and I have to do some major cleaning. Since I didn't do a "spring cleaning" this year I have to do a fall one. :) It's a big house and since e1 is traveling from NYC to get here in WV, I need to go through the bedrooms and clear all the stuff I throw in them (I'm lazy, that way). So e1 have a great weekend. May the weather be warm and dry.





ego sum non meus poena

[danashell]

Lori -
I just started reading this thread and wanted to chime in. I'm a nurse. No matter how tired, overworked, etc. I am, I never want to make a mistake with someone's meds. And on the (thankfully very rare) occasions when I have made a mistake, I have felt horrible -- but I was grateful to the person who caught it so that I could understand what happened and be more aware and careful in the future. So, if your nurse is a responsible professional, she should be able to accept the feedback that you have for her. And if she can't, well, then she's a discredit to the profession and the trust that her patients give her, and her supervisor should be notified.

Peggy -
We use Toradol (ketorolac) all the time for patients after surgery. It is a NSAID (a nonsteroidal anti-inflammatory drug) and is sort of like a super, super, strong ibuprofen or naproxen. I've never heard of it being injected into a joint. It is usually given IV or as a regular shot into a muscle. It has really good pain relief effects, but can only be used for a few days.

I've had psoriasis for 25 yrs but am newly diagnosed with "early" PA. It is really helpful to hear others' stories (even painful ones). Glad to know I'm not the only one feeling like a hypochondriac with mysterious, unpredictable, migrating pain.

Thanks all for sharing. Wishing you better days (and nights) ahead.

[peggyb]

Oh crap! If I would have known that it was just a shot, not a shot in the joint, I would have gotten it! I was out of town when I got the call from hubby, and by the time I picked up my little one from preschool and went to my mother's house, I only had a half hour to get to the doctor's office, and that would have been pushing it, and yeah, I was scared..... DAMN!!! Oh well. I just want to know exactly what the problem is. The pain is intense in my hip and groin, and then it shoots down the front of my thigh and into my knee. The doctor I'm seeing on Monday is the nicest doctor I worked with in the hospital (so I don't have to worry about a horrible bedside manner)...I hope he can discover what it is QUICKLY......

[danashell]

I hope so too....fingers crossed for you.

[nyoki]

Welcome Danashell, I'm new on these boards too.

I've been a "hypochondriac" for years. :) It took a long time for me to realize that all these disparate symptoms and pains were all from PS and PA. I am also diabetic and have to be very careful w/ all meds. I couldn't imagine a nurse messing up my meds. That could be so dangerous for people in our position.

I was diagnosed w/ PA w/in months of being diagnosed w/ palmer-plantar pustular dermatosis. I seem to be collecting auto-immune diseases. :(





ego sum non meus poena

[peggyb]

I was diagnosed w/ PA w/in months of being diagnosed w/ palmer-plantar pustular dermatosis. I seem to be collecting auto-immune diseases. :(


I think that's the way it goes for some of us when we get this stoooopid disease...first it's the p, then the pa, then maybe some fibro, then this and then that and yaddayaddayadda....I for one simply do not understand (but I certainly do envy) those who get a few patches on their elbows and knees and scalp, and that's it for them for life.....

I finally got to see the orthopedic doctor today. He had a few more x-rays taken of my hips today...and then he came in and had a long talk with me. My hips show moderate degeneration...but it's happening very fast. He said double hip replacement is inevitable...possibly just a few years away. Of course he suggested losing weight...but he was more concerned about my p. He said it was the worst he had ever seen...but then qualified it by saying he's an orthopedist, he doesn't see p everyday, but it is the worst he has come across. He said it was absolutely imperative that I go back to the rheumatologist and dermatologist and get it under control, and then began to tell me about the complications and possible infections one can get from having to cut into p...he looked at my hip and said, "Oh yeah, I'd have to cut right through it, and to tell you the truth, I'm extremely hesitant to do such a thing on someone in your condition, because if you became infected, it could mean months and months in the hospital, the strongest antibiotics...it would be so awful for you." He was also concerned about how fast it's happening...and that it has progressed so far and so quickly in someone my age (43). He told me how it is actually more difficult for a younger person to get hip replacements than it is for someone who is 70!! I didn't know that! But here's the thing that scared me the most...toward the end of our visit, I said something to the effect that yes, I would see the other doctors, because I had to get better, I had a four year old I had to chase...and he said, "Yes, and you don't want to chase him in a wheelchair." He said it was a real possibility. My eyes welled up....I don't want my baby boy to have to push me around in a wheelchair and help take care of me while he's still a CHILD.....

For the past two years, I've been avoiding treatment like the plague, for a bunch of reasons...for example, nothing's ever worked very well for me, the cost, my distrust of doctors, the cost, I'm sick of being sick so I'll just go into denial, and did I mention THE COST??? I've also avoided applying for disability because of my intense loathing and disgust at having to fill out the paperwork and then having to wait, most assuredly being turned down, and then having to fight it for god knows how many years......man, I'm starting to get MAD about it!!! I evidently need some serious help, and I'm going to have to jump through flaming bureaucratic hoops and fight like crazy to get it!! I'm not a fighter, people! I'm a neo-hippie who just likes to mellow out and do her own thing AND NOT HAVE TO ASK ANYBODY FOR ANYTHING...except that you please pass the dutchie on the left hand side. LMAO!!!!!

Ok, that's enough. I have a headache. Good night all.

[nyoki]

I am lucky in some ways. I was diagnosed quickly and while I was young. I've been a diabetic since I was a kid, so I was always careful and went to Dr.s all the time. I've always had excellent insurance too. My remicade treatments only cost me $25 and have low co-pays for Dr. visits and medication.

The dermatosis started when I was 25 and very quickly deteriorated and no topicals worked. I had PUVA treatments for years and it worked for a long time. I had been taking a sulfa med for the PA and it turned out I am allergic to sulfas. That's when all hell broke loose. My blood sugar went out of control, cholesterol jumped to unheard of numbers and my blood pressure nearly killed me. In effect the allergic reaction caused my blood chemistry to go completely out-of-whack. I don't even want to think about what it did to my skin. I was covered head to foot (even under my eye lids) w/ pustules. I was in the ER at least 2x a week for months. Now it has settled back to normal (for me) levels. My dermatologist and rheumatologist are personal friends so they've always consulted each other for my treatment. Except for the allergic reaction my treatment has been outstanding.

It's been my experience that it is always best to see a Dr. no less than once every 3 months. Of course I have so many doctors that I generally have an appt. once a week. :)

I hope you find the money for a regular rheumatologist/dermatologist. It is very important for keeping PS and PA from getting worse than it has to be.




ego sum non meus poena

[Ihurt]

AS FOR THE SSDI: You can file online. I advise that when you do, you contact your local Congressman's office. There are liason's at every Congressman's office to help with SSDI and SSI. They are very compassionate, and they will push your paperwork. Believe me, if you do it this way chances are YOU WILL NOT BE TURNED DOWN. They don't want to have to answer to a Congressmans as to why they turned someone down.

The important other thing: Depression. It's a biggie when SSDI makes their decision. The way to calch it if you will is to write down all the things you can no longer do and how that affects your level of derpession. For me...the main thing was taking care of my family...that's the killer for me.

Third and last what concerns me most about your post is the 'rapid onset" of symptoms. There are five types of PA the worst one being called Migrans. It also does the most destruction at the fastest rate. YOU MUST and i repeat MUST see the Rheumy. it's imperative that you be correctly diagnosed and treated to stop any further destruction. Double hip replacement at 48 even is not going to be easy. Right now it's the hips, but IF you have the migrans type of PA and you let it go you will be talking about replacing other things too.


If YOU DON'T HAVE THE MONEY FOR A DOC TRY GETTING ON SOME TYPE OF ASSISTANCE. IF YOU DO THAT WILL ALSO HELP WITH SSDI. Keep in mind you will have to stay on that assistance because once your on SSDI your not eligibile for Medicare for two years. Im sure Mike will be along with some links for you, but in the meantime, check this one out http://www.in.gov/isdh/programs/owh/index.htm
Go see your rheumy as fast as you can get in.


Here's another: http://www.in.gov/fssa/ompp/2848.htm

AND ANOTHER: http://www.indianamedicaid.com/ihcp/index.asp
Elaine

[nyoki]

Thanx for the info Ihurt. I will certainly take your advice about the ssdi.




ego sum non meus poena

[Ihurt]

Thanx for the info Ihurt. I will certainly take your advice about the ssdi.




ego sum non meus poena

I don't know if I have properly welcomed you but If I haven't Im glad your here :)

Your more than welcome about the advice. It worked well for me. I got SSDI the first time I applied. I worked with Becky from Congressman Kanjorski's office here in PA, and she was very compassionate with me.

Good Luck!

[1WeekAtATime]

I'm so sorry you're in this rough stage. It will get better, even if it takes longer than you want it to.

I'm not sure if this helps, but... I've been waiting for my Trexall (methotrexate) to actually start doing something, and I've been able to take Darvacet and Tramadol. They only take some of the pain away, but it feels much better than being swollen and cranky.

Make sure you mind your pain on a daily basis. Give designated times for resting of the worst joints, even if that means napping. Use braces if you can. Also, remember that swelling or a warm injury-like sensation needs ice or frozen peas and a stiff, creaky pain needs heat for circulation.

I hope you feel better. Make serious you time, gets lots of rest, and plan around your condition as much as you can!

[petey]

Its tough reading other peoples pain,'specially if you've been there and know it.You should know that there is hope around the corner and what seems like the next new treatments are soon to be available,they are in fact old,and in fact,treatment for this awful disease shall get better than you can imagine...but it will take time.I hope to be reading some happy happy posts from all of you in the future...because I will remember oh so how miserable some of the journey has been. petey...(with psoriatic arthritis but its better now-but not perfect quite yet) :) .

[mamaooch]

Thanks for thekind words Petey. I just want to wake up ONE morning without pain, hopefully that will happen. I try to keep the faith. By the way I love Led Zeppelin.

Have a good evening.
Cindy