Monday, October 05, 2009 Apache Jones asks

Q: RHEUMATOLOGIST NAME & APPOINTMENT SOON

I got the name of the referral Rheumatologist and will be making my appointment with him as soon as the referral papers come in the mail. Meanwhile my foot is still swollen (not as bad as it was) and still hurts. It is my left one just behind the toes. Feels like I have cotton wadded between the middle toes, like those things you put between your toes when you're painting the nails. Anyway that's what it feels like but painful, and also like I'm walking on marbles. I bet you all heard this pain described before, huh?

So what may I expect once I get to this specialist's office? Will he check all joints or will he just look at the one I'm moaning about? Will I have to get undressed? Let me know your experience.

Thank you in advance. OH, one last thing. Do many of you just have to learn to live with the pain of a certain joint like this and it never really goes away? This is my first flare up.

Charlotte

Apache Jones

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Answers (2)

Ellen Galo

10/ 6/09 12:35pm

Hi Apache, and welcome!

I think every case, and probably every doctor is a bit different. My wrist and ankle were my main problems at diagnosis, and I don't think I've ever undressed for my rheumy, except if there was some particular skin thing that was bothering me that I thought might be a drug reaction. My dr. also did a lot of blood tests and some x-rays. My GP had ordered an MRI of my wrist (swollen half-way up to my elbow at the time). Since going on medicine (first Remicade, but then switched to Enbrel because Remicade caused some problem), it's never gotten as bad. My foot still has a problem with the 5th toe joint but the ankle is much better following surgery (long recovery, however). Before surgery, for about 8 years or so, I used various braces ranging from an over-the-counter ankle brace, to a custom-made hard-shell plastic AFO (ankle-foot orthotic). After the surgery I went back to just foot orthotics, and about a year after the surgery, the foot he operated on didn't need the orthotic anymore (amazing...!)

So - I don't know if any of this helps you. What I WOULD suggest, however, is that you WRITE DOWN ALL THE QUESTIONS you have right now, and take it with you to the doctor's office. Write down all the symptoms that are troubling you. ... I find some things are side effects of other meds sometimes (such as headaches or muscle pain from Prilosec). Sometimes meds interact with each other, make sure he knows of any other medical conditions such as diabetes, heart disease, that might compromise your state of health. And be ready to ask questions if something comes up - or if you get home after the appointment and think of something else, write it down, and then you might try calling the office - rather than wait until the next one (unless it's soon). Listen carefully to any instructions you're given about meds - in fact, you may want to have them written down, if your memory is like mine! (I think some meds make that worse too!)

It sounds like your foot puts you in a really difficult situation. I hope that improves!

Apache Jones

10/ 6/09 12:46pm

Ellen..............thanks for responding to my quieries (and Hope, please write some more if you see this).

Now I feel a little better hoping I don't have to get all the way undressed. I just hate that part, not usually modest or anything, but new doctor, etc., you understand. Of all the minor aches and pains of my RA, this foot thing is by far the worst. As mentioned, we are hikers and I don't want to have to stop yet for physical reasons.

Now in the mornings the top of my left foot doesn't feel bad and I put on the ortho shoes I got yesterday, they feel nice. But as the day wears on, and of course with my weight on both feet, it will swell and hurt like hell. Also, that particular area on top my foot just behind the 3 left toes gets red, warm, and very sensitive to pressure. Does this sound like something you've experienced (or any others reading this)?

I do need to lose 15-20 pounds, so maybe that will help too.

Thanks again for writing. Please keep in touch. ~Charlotte - Apache Jones

Ellen Galo

10/ 6/09 1:25pm

There is something called Morton's neuroma - which is not really a tumor as it sounds, but a nerve that has swelled up. There is a nerve that splits closer to the ankle, and then rejoins itself near the 3rd & 4th toe (for most people). Various things can cause it to swell, including shoes that are not wide enough. Certain metatarsal pads can sometimes help (but they tend to float around), or a 3/4 OTC insert that contains a metatarsal pad - these will take some weight/pressure of that nerve. You can also get a shot of cortisone there to knock down the inflammation in the nerve. That often works for a while. After about 3, however, docs usually stop, because more cortison can damage/cause atrophy to the fat pad at the bottom of the foot. (I've had four, and I don't recommend teh fourth!) Surgery is possible if the shots don't help, but you would lose some feeling in the toes, which is not good. There are some other treatments available now that I just read about a couple of days ago - can't remember exactly where, however, but try looking up Morton's neuroma and treatment. If you have a podiatrist he/she can treat it and give the shots. My podiatrist did a better job (less pain - put a little xylocaine with the cortisone) of the shots than the orthopedist, who didn't believe in custom orthotics and didn't seem to care if it hurt - I think it made him think he was doing a good job!

My 5th toe joint near the neuroma gets inflammed easily, infact, that whole outside edge of my foot does. Orthotics can also help. Surgery is a last resort.

Hope this helps!

Hope

10/ 5/09 8:33pm

On my first visit I did have to get undressed and he did check all of my joints. But all he could tell me is that he was pretty sure I had some kind of arthritis but not what kind. He took alot blood, and started me on anti-inflamitories(that did not work). It was uneventful, I already knew I had arthritis, it runs in the family. It took almost 4 years to get on meds that actually work. I swear I have taken almost everything. The living with certain joints feeling bad always, I can only tell you my experience. It started in my feet and my feet feel like yours, like theres something extra on the bottom, they're very stiff in the morning and somedays, not all,the pain is unbearable. On the other days they just ache, the pain never has really gone away. But that may not be true for you or other people. I also have it in both knees and hips,elbows,wrists and some fingers and with the meds the pain is minimal most days those joints don't even bother me, its usually on the weird weather days. But everyone is different as you will probably find out. Not everyone reacts to the all drugs the same what works for me may not work for you. Don't get down about though, its not worth it to live your life worring about the pain, do your best to keep doing what you always do, it will keep you sane. Good luck at your appointment, I hope I didn't make it sound that bad. If I did I am sorry.

Apache Jones

10/ 5/09 11:14pm

Hi Hope............thanks for the reply. My left foot just hurts all the time right now and I can't comfortably wear a shoe. My husband and I are hikers and the season is starting in about 3 weeks and I am worried as hell!!

Apache Jones

10/ 5/09 11:19pm

Crappola, I clicked post comment before I was done...........senior moment.

So anyway, hiking is our passion and I think I'm not going this year. DRAT!!

I don't know why you have to get undressed for him to look at knees, ankles, feet, elbows and hands. Geesh. Plus I already have an RA diagnosis from a Rheumatoid Factor bloodtest. But I suppose he'll do that again, it has been 8 years so it is necessary again I guess. Ick, I just hate getting undressed and wearing those silly gowns.

I got what I think is an RA nodule on my elbow and the psoriasis that you can get from RA too on that same elbow. Geez, I just hate all this stuff.

Thanks again for answering

Q: RHEUMATOLOGIST NAME & APPOINTMENT SOON

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