Hello! Im hoping someone on this message board will be able to help me. Im a 27-year-old female just diagnosed with Carpal Tunnel Syndrome. And was just ruled out that I dont have a hand disease called Dupuytrens (Thank God) but they do think I have some bad arthritis. Im eagerly waiting to see a Rheumatologist, but in the meantime I thought Id do some research on my own to see what I could find out. Here's my situation:

About a year ago, I started noticing some symptoms of carpal tunnel syndrome. I didnt think anything of it until around fall of last year when I started noticing my hands becoming very weak. At the same time, my feet started hurting very badly. It hurt to stand on them for very long and they were tender to touch. The pain went on for months. I just assumed I was wearing bad shoes or was working on a very hard floor or something. My hands though became my major concern. After they started getting weaker, I started to notice that I couldnt draw my fingers into my palm. I literally cannot make a fist now at all because Ive lost so much use of my fingers. I also have some nodes in the palm of my hand which seem to be causing my middle and ring fingers to not straighten out completely. My knuckles have become swollen and quite large. My feet still hurt quite a bit. Mostly the pain is on top of the foot, in the boney area. Range of motion movements are painful. My knees are also becoming affected now. Going up and down stairs and walking on uneven ground is so hard. Im literally taking one step at a time. Sometimes its so painful, Ive often cried. Ive tried Celebrex, Vioxx, Naproxen, Amitriptyline, etc. Nothing seems to help yet.

My question is does this sound like arthritis? If so, do you know what form? Im trying to find out as much as possible so I can ask the right questions when I go see the Rheumatologist next week. Please let me know what you think. Thank you!

Meg
27/Female

Oh, my gosh! Your symptoms sound just like mine. My right foot gets this big sore lump on top at times and the arch hurts. My fingers at their base knuckles are sore on my left hand. I have my first doctor appointment the 29th, so I have not yet been diagnosed, but from what I have voraciously read, it definitely sounds like RA and not osteo.

Here are some questions I found on another website to ask your doctor:
What are my options for treatment?
What are possible side effects?
Can we work together, I will respect your ideas you respect mine?
Please explain the tests to me..ie: sed rate...RA factor, ANA...
Will I receive all my lab reports?
Are my children at risk for this disease?
What does that mean?
What type of approach do you recommend I intially try?
What are your feelings about other methods of treatment- i.e. Chiropractic, Herbal etc.
Will you let me play an active role in my treatment and in the decisions you make that will affect me?
What do the test results mean?
What is the purpose of the prescribed medicines?
How fast should the medicines help and which symptoms should be reported
immediately?
What is the best aggressive treatment to take at that time so that you don't have damage?
How can I educate myself about this disease?
What should I expect to feel like and notice?
What are the side effects of the meds?
What kind of activity can I take part in?
How do I get in touch with you if I'm having a problem?
Good luck.

Thank you so much!! I got to the Rheumatologist tomorrow, its my first visit. I'll post and let you know what they say!! I dont have much time to write right now, but will tomorrow afternoon. Thanks again!!

Meg

Well, I saw the Rheumatologist today. He examined me and my medical history and thinks I might have a virus-induced case of arthritis. I had Strep Throat last fall (october I think) and thats about when all my problems started. So, he sent me for bloodwork (ugh, they took 5 vials) and is waiting to get the results of those back to tell for sure if this diagnosis is accurate of not. If its not, then the bloodtests will be able to tell him whats going on with me.

In the meantime, he put me on a low dose of Prednisone for the next two weeks until I see him again for the actual diagnosis. Im keeping my fingers crossed that this is what he thinks it is.... a virus-induced case of arthritis. I guess all I can do it wait and see. Hopefully the Prednisone will help without too many weird side effects.

Meg

im still hopin my case is a virus type arthritis but i dunno... but dont get upset if the blood work dont tell ya much i gave about 16 vials in 2 weeks hasnt turned up a thing yet

Well, Ive been taking the Prednisone that the rheumatologist prescribed for six days now. Yesterday when I got up out of bed, I was able to without much difficulty. I say that because I still have trouble, but feel a little more stable on my feet now. I can walk on gravel again without my feet hurting from the many different angles. I also noticed that my fingers seem to be straightening out a little bit. By last night, I was actually able to put my hands together palm-to-palm and the palms layed flat against one another. Although my hands are not feeling their best this morning, I have a firm belief that this is helping me. Im thrilled that my fingers will not be deformed forever! I partly believe that I ended up with this disease because I was diagnosed incorrectly in January and that I think brought on much undue stress. I thought I had a crippling, deforming, progressive disease that would leave me helpless and disabled. I was told I had Dupuytrens because of the nodes in my hands. But it turns out, its arthritis.

I go back to see the Rheumatologist on the 8th and at that time he is supposed to tell me whats going on with me and what my course of action will be. Im eager and scared at the same time. I'll be happy to be off the Prednisone and to start taking something else with less side effects (hopefully).

I'll check back with you all and let you know what they say.... Im keeping my fingers crossed that its from a virus and that this will just need to run its course over time. But if its not, I dont know how I'll feel or what I'll do. Please keep me in your prayers.

Meg

Meg -

It's great to hear you are feeling better! I am still waiting for a few of my meds to kick in and I know I can feel better too!

I do have one question - What types of tests did your doctor do to conclude it was due to a virus? I think we have had similar symptoms and for a while I thought I had a viral type arthritis, until the doctor told me it was RA. I am actually going for a second opinion to this great doctor in NYC. If not anything else, I am looking to see if he suspects RA and what treatments he would recommend.

Best of Luck and definitely keep posting. I'm very interested in your prognosis/diagnosis!

My rheumotologist asked me many questions as he examined me. He was able to look at my fingers and squeeze them and he knew that my bones werent that BIG! LOL! He sent m for bloodwork and they took 5 vials for blood. They are testing for all kinds of things... lupus, fibromyalgia, many forms of arthritis, etc. He's also testing my muscles to see if its related to something like MS or something instead, but based on my initial visit with him, he thinks it all started from Strep throat that I had in October.

I had a lot of stress in October of last year and I think I got Strep from having a low immune system because of stress. I didnt realize that my achy joints were because of that though. I just assumed I was working too much and that the floor I stand on is way too hard. But from there, I went downhill. My hands started aching and nodes formed in my palm, which alarmed me and so I saw a doctor who misdiagnosed me (causing me more stress) and I continued to go downhill. My hands started to contract as they swelled. My fingers werent able to lay on a table flatly. I wasnt able to make a fist because I lost strength and now my arm muscles are weak as a result of not using them to move my fingers. I wasnt able to sit on the floor. I wasnt able to open a bottle of soda on my own. I had to buy a fluffy steering wheel cover for my car just so I could drive!

My feet would hurt from the moment I put them on the ground in the morning to the time I went to bed at night. Going up and down stairs was very hard and painful (and I live on the 3rd floor). I seriously felt like I was going to have to quit my job because I wasnt able to work like I was in the past. I thought I was becoming disabled... like "the misdiagnosis doctor" thought.

Now that Im starting to feel a little better, I am able to see just how bad it was and it almost makes me want to cry. Many nights I have cried myself to sleep because who wants to be 27 and feel 87??

I went from a primary care doctor (who only tried anti-inflammatory drugs) to an orthopedist (who wanted to just do surgery for my carpal tunnel syndrome) to a hand specialist (a good one too, he worked on Willie Nelsons hands) and he's the one that said I didnt have Dupuytrens and that he thought I had arthritis. From there, he gave me his secret list of TOP DOCTORS and he even made my appointment for me with one of them. Talk about your bedside manner!! WOW!! I liked him really well and will be going back to him a little ways down the road if I end up needing surgery for Carpal Tunnel. So anyway, he made my appointment with my Rheumatologist and I was immediately happy with him too. Doctors that take the time to explain to you why you *dont* have something tells me that they know their stuff. All this man sees each day is people like me with pain. He can figure out whats wrong with me. I am confident.

He is the one that put two and two together about the Strep Throat. He knows my family history of Lupus and other auto-immune diseases and still believes that its a viral-induced form (which I hope!). He prescribed me Prednisone for two weeks and I go back on the 8th for my actual diagnosis and course of action. He said if its the viral-induced form then treatment will be 1-2 years as it takes its course through my body. If its RA or something else, then we'll go from there.

Thats where I am now. I just want to feel normal again! Chronic pain isnt fun. Having hands the size of sausages isnt fun either. Walking like an old person when Im so young is embarrassing too. I felt horrible and it made my self image go down as well. Since I was only able to wear tennis shoes (because they were the only thing that didnt hurt) I was limited on my style of clothes. Today Im weaing sandals. Yay!

Meg