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Laura B

Newly Diagnosed

9 posts in this topic

Hi! My name is Laura, and I am 41 years old. I'm a single mother of three gorgeous daughters (ages 13, 16, and 20). I just got the diagnosis of Scleroderma a few days ago from my Rheumatologist.

 

I was diagnosis with Fibromyalgia about 10 years ago, so now there is some confusion as to whether it was an incorrect diagnosis, or I have both. (Lucky me, I know). My ANA test was positive, as well as a couple other tests.

 

My main complaints currently are difficulty in swallowing (feels almost like my tongue & throat are swollen), wrist pain (they definitely ARE swollen), severe fatigue, and joint pain.

 

My question is this. What, if anything is generally prescribed for pain? Or do most people NOT suffer from the pain I am feeling? When the diagnosis was "just" Fibromyalgia, I was seeing a "pain management" doctor. He graciously (and I say that with sarcasm) gave me 40 tabs a month. Hmm...use one every 4-6 hours for pain. You do the math.

 

Does anyone out there take pain medication, and if so, what seems to help you? I have a follow-up with my rheumatologist next Monday to discuss long-term treatment plan.

 

Thanks for all the great info everyone. I just happened across this site, and am so glad I did!

 

Laura

Atlanta, GA

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Laura,

Welcome to the forum! We're glad you are here but very sorry it's because of your diagnosis of scleroderma. So sorry that pain is part of your symptoms or an overlap of fibro. I wish I could provide some input on pain medications, but pain is not one of my symptoms. Id use to have small mouth but with daily exercises and an immunosuppresant that symtpom eventually went away.

 

I do know that several people are taking effective, non-narcotic, medications for pain. Hopefully they'll chime in.

 

Please keep us informed on how you are doing.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Laura,

 

Welcome to the site!! I also suffer from very bad pain and like you the Dr only gave me a RX for one pain pill a day. Janey suggested that I split the pill in half and try that. I did and even though I still have pain its not as bad as if I had not taken anything. I am so sorry that you have A Dr that really dose not understand how pain is for us. Good Luck and keep us posted on how things are going for you.

 

Hugs,

Patty


Hugs,

Patty

 

If Life hands you lemons, make lemonade.

 

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

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Hi Laura,

 

Welcome to the forums! I am so glad you found us, but sorry it is because of your recent diagnosis of Scleroderma. I have been taking Celebrex for about 3 years now (I was taking Vioxx but it was taken off the market, so my rheumatologist switched me to Celebrex) for joint pain and it works wonders! A couple of weeks ago, I had to stop the Celebrex for 10 days for a test and, oh, my ######! I really didn't realize how much it was controlling my joint pain until I had to stop it...I felt like I was 80 years old! I also take Neurontin to control nerve pain (from peripheral neuropathy) and Plaquenil which I believe helps my overall pain and general feelings of fatigue.

 

I hope your appointment with your rheumatologist goes well and he is able to start you on a great treatment regime. It sounds like you probably also need to see a GI specialist given your difficulties with swallowing.

 

Again, welcome! Please do keep us updated on what you find out and how you are doing.

 

Warm wishes,

Heidi

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Hi Laura! I'd like to join the others in welcoming you to this great board. I'm sorry you've been diagnosed with scleroderma.

 

When I had joint pain (in my wrists like you) my Dr. prescribed ibuprofen. It worked well, since I had no GI issues to deal with. Luckily the joint pain subsided a while ago.

 

I hope you'll start feeling better soon!

 

Best,

 

Claudia

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Hi Laura,

 

Welcome and I know you would rather be elsewhere but you have found a great place for information and support. THe one thing that really made a difference in long term pain was Plaquenil. Ask your rheumatologist about treatment with it and IF he feels it is necessary then he could put you on it. It is an antimalarial and works well on inflammation due to connective tissue. I had to go off once and I thought I would die from the pain.I have been on it three years now with no side effects. I hope you get relief soon. Susie54

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Laura,

I am so sorry for your pain and diagnosis. Like some others here, i have also tried different things for pain. I have to say that two years ago Plaquenil helped me the most, but now that I am off of it (four months now), i dont notice much of a difference. The one thing that has come back with a vengance is fatigue. Don't get me wrong, i still take pain medications, but I am able to take it on a "need" basis rather than every day.

 

This illness seems like it is such a roller coaster, so what works great now, just might not work the same a few months from now. I think that it takes patients and a caring Dr. to get the ballence just right.

 

Hugs,


*WestCoast*

 

********

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Hi Laura,

Welcome to the forums! I am glad that you have found us here but I am so sorry that you have a new diagnosis of scleroderma.

Many people here complain of pain so you are not alone. I have pain, but currently do not take any thing for it. Hopefully others can help you out with that and you are feeling better soon!

 

Take care,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Hi Laura,

 

Welcome to the Sclero Forums. I'm sorry you are so ill. :( I am on plaquenil which helps with fatigue and pain. I occasionally have to take something else, but I sure try not too.


Your Friend,

 

Gi Gi

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