I need some advise

General
1

Hey friends :o) I'm dealing with some confusion and am not sure how to proceed with things. Quick background - I've got PsA pretty bad, but started taking Simponi a couple months ago, and have been feeling much better than before. Unfortunately, I am 33, was just recently diagnosed properly and have been having symptoms since I was about 17, so I'm dealing with some pretty major damage to some of my joints. My right ankle is the worst. My rhu. sent me to an orthopedic surgeon for a 2nd opinion, and 6 weeks ago I was put into an orthotic (arizona boot) which is helping with the pain. BUT I have been having these ridiculous sharp shooting pains in my ankle that are not going away, I have been having these pains since before I started wearing the orthotic.

The ortho. surg. said today that I will have to wear this orthotic for the rest of my life, that he does not want to do surgery because cutting into my ankle would be like "opening up a hornet's nest" I told him I thought the shooting pain might be from the bone spur they found on the MRI a few months back and he said, "some people think they feel pain from a bone spur because they know its there..." and I just wanted to break down. It feels like this doctor is basically saying that he doesn't believe I'm in pain. I am so confused right now about what to do, he said it is "up to me" to have the surgery. Well I sure as hell do not want to open up a hornets next.

I need to get a second opinion, but, I don't know, I just am feeling really defeated right now.

~Angie~

2

Thanks trees. No, I don't really like this guy, I've only seen him twice and only because my rhu. asked me to see this guy because she wanted a second opinion on my ankle, after she had viewed my MRI. I think I'm going to tell my rhu. about my experience so far and see if I can either just not go to an orthopedic surgeon (since I'm not trying to get surgery anyway) or maybe she can recommend some one else.

I'm sorry your foot is super messed up too, is your boot helping? Mine is helping a TON, and I am so glad it is small enough to fit under my tennis shoe so no one can see it when I'm out!

Have a great New year!

3

Hi Angie, I am not a doctor and I do not have the answers, but always get a second opinion before making any major changes, or operations, I do agree that if he were to do surgery it would most likely make or create more problems. Sometimes the doctors can be insenitive to what we are feeling, make sure you have confidence in you doctor/s, it is so important that you feel listened to and respected as a patient. Good luck in whatever you decide to do, but coming here and getting some input is a good beginning! Hugs Colleen

4

Hi Angie, sorry to hear about another arrogant doc who thinks he knows more about how you feel than you do. They should give anti-arrogance classes in med school!!

Anyway, so much for my rant. My right ankle is pretty messed up with PsA, too. I have lots of synovitis and spurs. I get these sudden shooting pains. I told my physical therapist it feels like something is being pinched in the joint. (And when I say pinched, I don't mean something minor. Feels like it's being pinched in a vice maybe!) He said it really could be a pinch. If the synovium is swollen enough to extend into the spaces between the bones of the ankle, it really does pinch.

I wonder if this is what you are experiencing. I know it's a stab (no pun intended) in the dark, but thought I'd pass this along in case it speaks to what you are experiencing.

He showed me how to "distract the joint," which is fairly simple, but I doubt I can explain it well here. I'm sure any physical therapist could explain the technique. Most of the time, it will give at least temporary relief. Let me know if you think this relates to what you feel in your ankle. I'm curious if anyone else gets this!

Hope you are having a good day today!

5

Hey Byrd. Yeah, that pretty well describes what I'm feeling too, and its so random when it happens. Sometimes I'm just sitting there when it hits, sometimes when I'm driving (which is kinda scary). Its a super sharp pain that lasts only a few seconds and travels half way up my leg. It seriously stops me in my tracks when it happens and it does this several times a day. I am on Simponi, and aside from the occasional flare up, all my other joints are feeling pretty awesome, but my ankle doesn't seem to be getting any relief. I told the ortho. all this and his reaction was to say, "well, I hate to have to tell a person that they have to deal with pain the rest of their life, but" It was hard to hear, maybe I'm just in denial about the whole thing still.

I am glad though that you've found a technique that helps with these pains. Is there a website or anything I could check out to learn about this?

6

Hey Angie, I don't have the same pain, but trees brought up an interesting point. Have you asked if you can go see a physical therapist to see if that might help or if they might be able to give you some tips? It's worth a shot, and I can honestly say that when I was seeing a physical therapist (prior to the PsA diagnosis), it did give me some relief. It didn't totally fix it, but it helped.

7

Hey CJ! I was actually just starting to think about this. Yeah, I don't think it could hurt to ask my rhu. for a referral to a physical therapist. I'm going to do that at my next visit. Thanks for the suggestion! :o)

8

Hi, Angie,

Sorry to hear you are experiencing the same kind of ankle pain I get. It's the pits, isn't it? And, yes, it is very scary when it happens when I'm driving. The good news is, I've had this for many years and so far it hasn't caused me serious trouble when driving. (Cross fingers!)

I'll try to describe how I manually distract my ankle, but I would feel way better if you could get a PT to describe this to you. I don't intend this to be medical advice, as I am not a medical practitioner. But I will describe the technique as I do it.

In a sitting position I place the affected ankle on the opposite knee. (Since this is difficult to do for me, I sometimes have to lift the ankle up there by pulling on my jeans.) My affected ankle is the right one. With my right hand, I stabilize my right ankle by grasping the ankle with my right hand (at the bottom of the shin, just above the foot). I cup the heel of the right foot in my left hand. Here's where the distraction technique starts. GENTLY pull the heel straight (in line with the leg) away from the rest of the leg. Please be GENTLE. A little goes a long way, especially if you are strong! While you have it pulled away, gently move the heel of the foot to the left and right three times. GENTLY use the hand that is holding your heel to allow the heel to return to the normal position and, then, release. Don't let go until it is back in place. It is very important not to let your foot "fly" back into position. Be extremely gentle and easy with your motions and if anything hurts abnormally, STOP. (It shouldn't.) You can do this three times in a row. The key is gentle, easy movements. The goal, as I understand it, is to give the synovium a chance move out of the joint spaces where it is being compressed, or pinched.

This is called a "manual distraction." If you look on the net for ankle distraction, you may find links to surgical distraction, which is not what I'm talking about.

The whole thing goes a lot easier if you have someone who can do this for you (a loving husband or a caring sister). I never could get my better half to do it right; he always wanted to let go and let my ankle fly back into place and it hurt like heck. So I learned to do it for myself.

Don't expect miracles. But sometimes if I have this problem so bad that I am having great difficulty walking, this will help ease things back into place so that I can keep going.

I hope you find this information helpful, but, again, I would be so much happier if you could get a PT to explain it to you. There may be something else going on in your ankle that would make this an inappropriate procedure for you.

I hate, though, when someone knows about something that might help me and won't tell me about it. So this is why I am describing it for you. PLEASE don't get hurt trying this!! I never have gotten hurt, but I wouldn't want you to try something that works for me and find out it wasn't right for you. Don't want to hurt my arthritis buds!!

Hope you are having a great day today!

9

Thank u Byrd for taking the time to type all that out for me, I really appreciate that!! I am pretty sure I'm going to go see a PT, but in the meantime will try (carefully) to do your thing and see if it will help a little.

I am having a great day, and hope you are too!

10

You're quite welcome. I hope it's useful information for you!

11

Is there any reason that you can't find another orthopod?

12

No there's no reason, this guy was recommended by my rhu so I assumed he'd be the one. I just need a break from all the doctor stuff for awhile, but yeah that's a good idea, it couldn't hurt to at least research other orthopods.

13

We can do a lot to take care of ourselves and adapt to whats happening to our bodies. Sometime we choose to look for the quick cure (there is no cure) or fix and figure it can come from the Docs in a new pill. combination of pills, or "procedure" it doesn't (nor does life in general) work that way. Now this doesn't necessarily apply to this problem but is worth considering anyway.

I've got a great doc, depsite the fact she seems to be 15 years old. Had a very interesting talk with her this week. Thought I'd pass it on. She told me the greatest difficulty in treating patients is openly or quietly huge numbers of patients think the Docs are the bad guys. Somehow they think if they state a problem there IS a solution, but the Doc is choosing NOT to give it to them.

There may be a solution BUT more often than not what she gets is a complaint-symptom or a grocery list with the patients expectation she understands. She doesn't. Every patient coming into hurts (or they wouldn't be there.)

She said if patients would follow the Arthritis Association's recommendation for an appointment many more patients would gt better treatment. The primary thing she said is not to drop a laundry list of complaints on the doc. Few can process it (they are human) What ends up coming out of it is yeah this person has AS, PsA, or what ever and all the doc can do is provide the "treatment" based in the diagnostic criterea.

Instead concentrate on no more than 3 problems, don't self diagnose (this is not to say you shouldn't ask questions) With each problem give specifics and examples of what happens and what causes it. Here's an example (real life)

I have had pain in my shoulders for a very long time, it wake me up at night. I have to be very careful of my sleep positions etc etc. I have mentioned it in many appointments. Well that kind of shoulder pain one of the diagnostic indicators for PsA so not much happened.

This last visit I said something different..... "Wierdest thing, I was standing in line at the store holding a half gallon of milk, (like carrying a suitcase) and my shoulder started to hurt, felt like my arm was going to fall out, and then I couldn'r lift it." Her response was:

"really... Thats not right." Within 10 minute she had her injection kit out poked around and I have been pain free for several weeks now (in the shoulders anyway :-) I asked he why now and not before which is what lead to the duscussion.

I guess he secret is to make sure you give enough and specific enough information to let them hget there teeth into it (and not so much they can't deal with it) Otherwise we really are no different than a six year old with a tummy ache.