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#1 gnoiseux



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Posted 29 October 2009 - 01:02 PM

7 years of "connective tissue" symptoms. I'm 26.

It all started with 1 swollen finger. Right index finger. grew to twice its size and was hot and so so so painful. I remember trying to drive without it and just crying in the car it hurt so bad to steer.

Definitely have Raynaud's, but I manage with mittens and warm water. Flare ups have since involved other joints: including elbows (tender to touch, but not swollen) wrists (very very painful) and Metatarsal (very painful, makes me limp around).

Swelling minimal except for fingers (currently normal, and have been for years) and Great toe/midfoot.
Anxiety and depression since the teen years.

GI symptoms mainly constipation, bloating, gas. some heartburn.

Muscle aches and trigger points. I have no idea if they are related. I am in grad school...

Currently just my right wrist and my left 1st met head are bothering me. pain comes in cycles. Get about 3 flares a year. Seems like winter time is the common trend? significant disability in day to day life. Currently in PT school. Could stress be involved?

Been seen by 2 rheumatologists (after going to a hand specialist, allergist, acupuncture, and orthopedist, not to mention a physical therapist) current doctor just did 2nd set of labs. All labs are not diagnostic but "suggestive"

+ ANA, -RF +SCL-70, sed rate normal (??) thyroid runs low. Ran two tests for lupus and they were both -. but I have had a + in the past.

Currently taking rigoxin? an NSAID... tried meloxicam and celebrex but they didn't seem do anything. Recently added pain medication to get me through the day. It could get me so wound up I could scream. Welbutrin and selexa to cope. Benedryl to sleep.

I feel like a pot of toxicity, yet all I eat are deep leafy greens and whole grains and fresh fruit. (some organic meat, and dairy). I don't smoke or drink. I exercise 4-5 days a week even when I'm tired. I garden. I have two cats whom I pet and love on.

I tried plaquenil maybe three years ago under the other doctor and it gave me a rash. IS this even possible?? It was on my stomach and went away when I stopped taking it. Should I try it again? Are there other medicines that would be better? How do I prevent my joints from degenerating? How do I get the swelling down. Does ice help? Or heat? Compression? Elevation? Anything? I have been exhausted by searching for answers. I've read everything I could get my hands on about scleroderma, Sjogren's, lupus, fibromyalgia, polymyositis, and I have no idea.


#2 Jeannie McClelland

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Posted 29 October 2009 - 04:30 PM

Welcome to the Forum. I'm sorry you are in so much distress. Are you currently seeing a rheumatologist? All of your symptoms could belong to a myriad of things, which can be very frustrating when you are looking for answers. As you know, we can't even begin to offer a diagnosis nor suggest a course of treatment. We certainly would never suggest you start or stop any medication. I'd really suggest you work with a good rheumatologist to try and identify what is causing your pain and get appropriate treatment.

You mention you are in graduate school and are studying PT. Have you thought about consulting with a physiologist about ways to maintain healthy joints?

Feeling constantly unwell and the demands of graduate school must be putting you under a great deal of stress. I'd like to refer you to the page on Emotional Adjustment. Good coping skills are helpful to everyone and there are some good links on that page that might be helpful to you.

Best wishes,
Jeannie McClelland
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#3 Shelley Ensz

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Posted 30 October 2009 - 11:33 AM

Dear Gnoiseux,

Welcome to Sclero Forums! I'm sorry we can't help with all of your medical questions (so many at once and most of them really need to be addressed by your doctor). But I'm sorry you're not feeling well and are having such a difficult time of it.

Generally speaking, as I understand it (and keep in mind I have no medical training at all) rashes from plaquenil usually only occur after several months of treatment, and then usually just going down to a lower dose resolves it. So, your rash could have been caused by something else or treatment might be manageable for you at a lower dose.

Since you're in PT school, I think you'd have a much better idea than any of us how to manage your joint pain. My input is, do whatever your PT tells you (LOL), if it works for you. I use a combination of many things depending on what part is affected, including a healthy dose of ignore-it-and-it-will-go-away, which I manage by using the fine art of distraction (anything to keep my mind occupied with something else). Sometimes I think even a hot or cold pack might work because they distract our brain from the pain into the sensation of hot or cold; on top of the actual physical effects.

Anyway, what I was going to get around to saying is that you could consider seeing a scleroderma expert, since you have Raynaud's and a positive SCL-70. However be aware that without distinct scleroderma symptoms, such as tight skin or pulmonary fibrosis, it is rather likely that you would remain in the "undiagnosed" category for a spell, to see if things just cleared up on their own, or if things progressed. Many people with symptoms of connective tissue disease never go on to develop a full-blown sort of disease at any point, which is why there is commonly a wait-and-see attitude.
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#4 janey


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Posted 31 October 2009 - 11:03 AM

I'd like to join the others and welcome you to the forums! I'm so sorry that you are suffering with so many symptoms. It's not surprising that it is affecting your emotionally. That's a natural reaction to the unknown. You asked if stress could contribute to some of your symptoms. Well - from all of the research that I have read, stress can contribute to A LOT of stuff! No matter who we are or what we are suffering from, we should, if at all possible try to reduce the amount of stress in our lives. (Easier said than done sometimes.)

I agree that you should try to meet with a scleroderma specialist since you do suspect that you might have it. No matter who you meet with, a specialist or a rhematologist, be sure to take in a written list of ALL of your symptoms and all of your questions. We all get frustrated in front of doctors that if, it's not written down, we tend to forget something. Also it helps to have a family member or friend with you on the first couple of visits.

As you have probably already read, scleroderma, as well as many autoimmune diseases are pretty hard to diagnosed. That's why keeping a written record of your symptoms is so important. It certainly worked for me. I took my list in when I saw the rheumatologist the first time and was diagnosed on the first visit. Of course I did have tight skin on my fingers and hands at the time, so that helped. It's gone now and I have no visible signs of scleroderma, so one could tell at this point.

You mentioned that you seem to get flares in the winter. Well, you are not alone! January is always my worst month. My hubby holds his breath during the entire month. He loves February because he gets to breathe again. :VeryHappy: For me, the cold just affects my whole body. I'm not doctor, but my theory is that it restricts my vascular system (blood vessels) causing me to be cold and restricting nice warm blood to everything. As a result, I'm more fatigued, get less exercise, cough more, and have a hard time breathing. I don't like winters!!!!!!!

I hope you get some answers. Please see about doctor about your symptoms and many questions. Don't wait until things get worse.
Janey Willis
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