Jump to content

Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Have new severe Pain

  • Please log in to reply
8 replies to this topic

#1 Morgan


    Bronze Member

  • Members
  • PipPip
  • 11 posts

Posted 27 October 2009 - 04:20 PM

I am having severe lower body muscular pain. I hurt so bad that I cannot even touch my leg muscles. I work in the OR and usually wear support hose and could not wear them today. When I was finished surgery I had a lot of swelling in my ankles. Does anyone else have this type of pain. I have now been on plaquenil for almost four months. I have called my rheumatologist and he wants to try something else. I would love to know what someone else who feels like this does. I also feel so tired that I can hardly keep open my eyes. day or night. I really feel that I am getting worst. and something more is going on. Please help as I am beginning to get depressed. Thanks

#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,263 posts
  • Location:Minnesota

Posted 28 October 2009 - 04:10 AM

Dear Morgan,

I'm sorry you are experiencing these symptoms and hope you feel better soon.

Have you thought of mentioning this new severe pain to any of your co-workers? Or being seen in E.R. for it? They have a tremendous advantage over us, as we have no medical training. Any of us could be having the same type of pain or ankle swelling or fatigue but that doesn't mean it is due to the same thing, or even that it is due to scleroderma. Similar symptoms can be caused by many other illnesses or even by medication side effects.

Please let us know what you find out from your doctor.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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

#3 WestCoast1


    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 554 posts

Posted 28 October 2009 - 12:29 PM

Hi Morgan~

I have to say that I am so sorry for the pain you are going through! This kind of pain is something that doctors have such a hard time dealing with becuase there is no "evidence" other than our very real pain. First, I hope you are able to find a doctor that can really listen and try to help you.

I also have this awful pain in my muscles. What I have been told recently by a doctor is that it is my brain registering false pain. I have had migraines for so many years that doctors have not been able to cure, so this pain cycle has gotten way out of control. I now have a pain similar to a fibromyalgia pain, but not fibromyalgia.

They have recommended that I take a medicine typically prescribed for this and see if it can help.

I can't say if this is what you are going through, but I really hope you are able to pin point the problem and find relief.

Gentle hugs~


#4 Snowbird


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 28 October 2009 - 12:30 PM

Hi Morgan

Sorry, I can't help answer that but I do hope you feel better soon. I think you should always go with your instincts...if you really feel that something else might be going on or if you have any little doubts at all...then do not ever hesitate to get it checked out at your primary or the ER! It's always better to err on the side of caution when in doubt.
Sending good wishes your way!

#5 Peggy


    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 635 posts
  • Location:Minnesota

Posted 28 October 2009 - 01:58 PM

I have terrible muscle pain in my legs and arms all of the time, along with terrible fatigue. My poor rheumatologist doctor is trying everything he can to try and battle this pain and right now we're trying Methotrexate to see if the swelling goes down if it will help with the muscle pain. Unfortunately it isn't working. I have to wear a pain patch that administers pain meds to me 24/7. I also have to take the oral meds too. I know what you're going through and I sympathisize with you. I don't think anyone really understands how much it hurts and how hard it is to hurt like this, especially when it's almost all of the time. It's really bad if I tax them too much by trying to do too much or when I ride in the car for any length of time and my legs are constricted in one position for too long.

I have systemic sclero and polymyositis and I don't know which of these diseases are causing this pain and I guess I really don't care as I just wish it would subside. I have accepted the fact that this will be how I have to suffer with this disease, along with the terrible reflux/gerd issues and the lung involvement on top of it.

Good luck to you and warm hugs,


#6 Morgan


    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 11 posts

Posted 29 October 2009 - 10:42 AM

My leg pain is so bad even a light touch such as someone giving me a pat on the knee makes me want to cry. You dont realize how people touch you on a daily basis until you hurt when they touch you. I finally had to ask the people that I work with to stop. How hard was that. Now they just do it on accident and feel bad when they realize they have hurt me. I can hardly climb stairs, or get up in the mornings. Another symptom I am having is I feel as if I could fall asleep at anytime of the day, at work or while driving. How do you deal with such pain on a daily basis. Mine has been about three weeks and I am about to loose my mind I cannot get anything done, I am in school and am falling behind. I work at least 45 hours a week. have three kids a husband and a house to run and everything is going down hill. best wishes to you

#7 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 29 October 2009 - 10:56 AM

Morgan, have you seen your doctor about this? With that amount of pain, it really ought to be checked out. Do you have a good rheumatologist? If it were me, I'd be on the phone.

No hugs - not even gentle ones, just best wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#8 bookworm


    Silver Member

  • Members
  • PipPipPipPip
  • 292 posts
  • Location:Texas

Posted 29 October 2009 - 08:51 PM


I also would let my doctor know immediately and I would ask for a referral to a pain specialist. It took me months, but finally, I have my pains under pretty good control but it took a pain management specialist to help! They aren't afraid of the drugs that work!!

Good luck to you.

Mary in Texas

#9 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 30 October 2009 - 08:46 AM

Hi Morgan,

I hope that by now...you have consulted someone concerning the pain/swelling you are experiencing.

As Shelley spoke to,, we are not doctors and what is going on may well be something that should be addressed.

Being from the medical field, I'm sure you are well aware of what "could be". However,being in the pain you are,
I cannot imagine that you would want to postpone seeing someone about this.

Please let us know how you are doing and what you are able to find out?

Wishing you the best!
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)