advice/suggestions-new to this

[mb2]

Hi everyone. I appreciate all the support everyone gives here and would like some suggestions about my situation. Until last summer I was very active with running and cycling and racing in duathlons. Last summer I had knee arthroscopy which showed severe chondromalacia, repaired 2 meniscal tears and smoothed the cartilage. Since then I developed a sausage toe and finger and sacroiliitis. I have had lots of other aches and pains as well. I finally found a great rheumy who dx'd PA, although I don't have P, my father did. I started Enbrel in May. I also have OA in many joints.
Now another toe seems to be starting to get big, and the ball of my foot hurts when I walk, my heel is sore on both sides of it. My foot pretty much is sore most of the time and I mostly wear running shoes bec they are more comfortable than anything else. Also I tried a Pilates mat class and my left wrist just gave out under me and I fell onto my elbow. The wrist was really sore after that. My hands are really tight and I can't make a fist with the hand with the sausage finger. I can also feel a place in the pubic area that feels like a bone is sticking out and is tender.
Is this a flare? Is this maybe bec the Enbrel isn't working well? My sausage digits have not improved dramatically since I started Enbrel, but they look less inflamed and are not as tender, although I've lost range of motion in the finger even though I've continued to use it and to bend and straighten it.
I'm now getting very uncomfortable on my bike: feet, hands and bottom! I want to have a way to exercise. I do ride my bike, but not nearly as much as I have in the past bec I'm getting tired faster, not all due to lack of training.
Ideas, suggestions, comments? Rheumy said to come in sooner if I have a flare. Am I?

Mary

[ouchyk]

Hi Mary,

It could be a flare if your joints are swollen. If you can't make a fist then it's probably best to call or e-mail your rheumy and let him know about it.

Do you take Enbrel alone? or with MTX or Nsaids? You can flare thru enbrel it's not unheard of however the flares should be shorter in duration and not as severe. Sometimes you need an extra boost from another medication to get the swelling and pain under control.

You could try aquatherapy for exercise, it's gentle on the joints. www.arthritis.org has information on this. You should ask your rhuemy first though.


Hope you feel better soon,
Karen :)

[mb2]

Thanks for the advice. I also take Mobic. I'd stopped it for about a month bec I got a shot of cortisone for allergies and asthma and the Mobic is killing my stomach--now I have to take Protonix twice a day for acid reflux. That gets much better if I don't take Mobic.

I'm sure aquatherapy would be good. I love to be outside. I am seeing so many of the things I love to do being taken away from me.

I'll look at my toes and heel and the new places that hurt and see if they are swollen. I think they are a little bit. Hard for me to know when something hurts if it's PA or OA. I take my Enbrel again tomorrow and maybe that will help also.

Thanks for the advice.

[ouchyk]

Mary,

I'm sorry that you see a lot of things being taken away from you, I know that a lot of us feel the same way and it's not easy.

Once you find the right mixture of medications that work well you might be able to pick up a few things that you've lost and perhaps you can adjust your activities that fit well with the way that your feeling.

Toes and heels are a common place for PA to strike. I'm not sure about OA but my first thought would be PA in those areas. I know of another member who sometimes has cortisone shots into her heels, it hurts like heck but it does bring relief. You could try rotating ice and heat and see if one or the other or both do anything to help. I would probably try ice if your joints are swollen, heat can sometimes make you swell worse. It's really hard when it's in your feet and ankles, how the heck are you suppose to walk :( .

If you want, you can use the search button on the top of this forum to see what type of shoes that some of us with PA found helpful. I'm going out to buy some gel inserts for my heels today. I'll let you know if it helps at all.

Prilosec/prevacid and most likely the drug that you're on will help to protect your stomach. I'm glad it's helping you, I took prevacid for 3 years and it did help with the side effects of nsaids. Sometimes you can switch your nsaid and find it can make a lil bit of a difference.

Hang in there,
Karen

[vmars]

It really is a pain trying to find the right mix of meds but hang in there it will be worth it in the end. You will probably be able to resume some of your favourite activities. My life is soo different now than it was two years ago. Like most of my friends I can now forget I have pa (as long as I've had my meds at least).

All the best to you

[mb2]

Thanks, Karen and vmars. I'm able to wear supportive running shoes with orthotics much of the time and that helps my feet. Now they are getting worse. How do you do the search? Just enter shoes? or protective shoes?

I'm glad to hear that there's some hope for this and we just need to find the right meds. I think I've gotten better to some extent but the PA is still spreading. It seems like my life will never be the same.

It's good to know that it's possible to get back to some of the other activities I enjoy. I wouldn't do anything now that involved much walking and my fingers/hands won't let me do much stuff like gardening. It would be great to improve!!!!!!!

Thanks for hope and advice--
Mary

[ouchyk]

Hi,

I did a quick search on " heels " and came up with this thread, it's pretty recent and maybe you could find a few good ideas there.

http://www.psoriasis.org/forum/showthread.php?t=15959&highlight=heel

Here is another one about shoes.

http://www.psoriasis.org/forum/showthread.php?t=14466&highlight=shoes

I personally wear reebok walkers for tennis shoes, they are lightweight yet offer support, I also wear naturalizer clogs as the back of my heel and achilles sometimes gives me grief and rockport shoes.

As I type there are new drugs being developed and studied that offer great promise.


Keep the faith!,
Karen

[mb2]

Karen:

Those are very helpful. Interesting about the shoes bec the New Balance and Nimbus shoes are two that I'm using or have used. Maybe why my feet haven't been sorer sooner.

The thread on heel pain explained a lot and showed me that I'm not alone with this.

I don't walk around barefoot now bec it would be painful. My son is getting married in April and I'll need some nice looking shoes for that. I hope this all gets under control before then.
You have been very helpful and supportive. This whole thing really sucks and I wonder what I'll eventually be able to do.

Thanks for all your help!
mary

[MikeK]

Hi Mary,

Welcome to the Board! :cool: Nice to meet you. I'm sorry to hear that you're going through such a rough time. :( I hope that you find the right combination of meds that will work for you.

Congratulations on your sons upcoming marriage.

You've already been given some great advice from Karen and vmars. Here's some links to a couple of other discussions about shoes:

http://www.psoriasis.org/forum/showthread.php?t=10610&highlight=Dansko;

http://www.psoriasis.org/forum/showthread.php?threadid=5862&highlight=Dansko. (This link includes a link to yet another discussion.)

I hope this helps.

Good luck. Feel better. Keep us posted and please don't be a stranger.

Mike

[mb2]

Mike:

Thanks for the links. I'm going to try some Dansko shoes. I am a hard fit in a shoe. I wear orthotics for a leg length discrepancy so one of the orthotics is built up and I need a deep heel cup.

Unfortunately for my feet at my son Mike's (he's also Mike K) wedding, the dresses will probably be tea length which means about halfway down the calf so people can see your shoes. At my other son's wedding I wore a long dress and felt that as long as the shoes were black no one would notice.

Great links, lots of good advice and practical info. I'm going to the PT tomorrow for my torn rotator cuff and I might ask him to look at my feet and some places nr my ankles that are slightly swollen and tender. See what he thinks.

MikeK is a good name! thanks for your help,
Mary

[crimekate]

I don't have PA in heels/toes (ankles tho) but I have bunions (small ones, thankfully). I have to be on my feet for long periods some days for my job - Dansko makes great shoes. I don't know where I'd be without their Professional series clogs. They're not exactly "fancy" looking, but quite presentable. They also make other shoes and sandals that are more "feminine", so you might check them out if you're looking for shoes for your son's wedding. Their shoes aren't cheap, but I"ve been wearing my first pair of their clogs (almost daily!) for about eight years, and they're still going strong.

Good luck!!

kate

[SJand3kids]

Dear Mary,

I was diagnosed with PA two years ago. Like you fitness was a big part of my life (running, biking (spinning), body pump). As my pain shifts from place to place in my body I alter my workouts. One constant I’ve found is in weights. I now take a body sculpting class three times a week to work my legs, abs and arms. Most is done with free weights so I can alter the weights according to what is affected. The best thing I’ve found is listen to your body (since you are into working out you will be able to do this better than most) and stick to a routine (even when you are hurting). Going into this disease in good shape will help in the long run. Try not to get discouraged if you aren’t doing everything you used to. You are still far ahead of the game!

Good Luck!

Sara B

[mb2]

Sara:

Found your msg right after I returned from the gym, very appropriate. That's really good advice. I've had a routine that I've followed--2 yrs ago I was running 3 days/wk, cycling 3 days/wk and racing every every few wks. Then I had arthroscopic knee surgery last July and the Dr said I had to stop running bec I had bone on bone OA in there.

Since then I've been trying to figure out how to stay active while I've gotten PA showing up all over my body. ("Staying active" can mean a lot of different things depending on the day.) I guess I'm sorting out what it means to me to have PA and how I have to adapt. Yes, concentrating on wt training seems like a good way to go.

Thanks for the encouragement. I needed to hear that today. It's hard to adjust to this. But you're right--going into the disease in good shape will help. I just keep fighting through it as much as I can and then I sleep.

Mary