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Need Help With Pain

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#1 carol5



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Posted 27 April 2007 - 08:39 AM

Hi all, I am a newbie ;) but not to scleroderma. I have CREST but it seems like I have Limited also. I have been experiencing Pain in my legs and back and hips, etc. I have been to many doctor's. The ortho surgeon finally said, there is nothing wrong in x-rays, mris...etc....he feels its the scleroderma. I have talked to my rheumatologist many times and can't seem to get an answer from him on what is causing this pain. From readings I have done..I am wondering if this could be from tendons or muscles tightening or calcifications on them. Does this make sense? Is there a test that can be done to determine this. My rheumatologist is good, but not aggresive or talkative. There are no rheumatologist's in my area as well that are close. Thanks so very much in advance. Keeping all of you in my thoughts.

#2 janey


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Posted 27 April 2007 - 04:07 PM

Welcome to the forum! I'm sorry that you are suffering from joint pain as a result of it. I'm not sure what causes it other than inflammation, but it could be the stiffening of the connective tissue due to collagen production. That's just a guess. During year one I had a left knee that had a swelling about the size of a grapefruit on the side. Like you, they did an x-ray and MRI and found nothing. The swelling eventually went away, but the pain comes and goes, usually at night and is accompanied with pain in the left hip. To stop it I have to get up and walk around and it shortly goes away. In our Joint Inflammation section you'll find that exercise does help with joint pain. It seems to help me.

I hope you find something that helps Darlin'.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
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International Scleroderma Network (ISN)

#3 CarriePan


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Posted 27 April 2007 - 04:15 PM

Dear Carol~
I too have a lot of unexplained pain. I have hip pain and my knees hurt. I have had xrays and ultrasounds and nothing. It's very frustrating to say the least that no one can find what's wrong. I have CREST and limited. I now have GERD. I have a constant lump in my throat and swollen legs and fingers. I have extremely dry eyes and need to have a dry eye work up with the eye dr. lol Anything else?? lol ...oh wait...the chest pain comes and goes. It feels like someone is crushing me. I feel like I'm a hypochondriac sometimes but I know there is something wrong, ya know what I mean? I hope you are feeling well~
take care,
CarriePan :fairy:

#4 carol5



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Posted 27 April 2007 - 04:45 PM

:) Thank you all so much. I too have Gerd, Pericardial effusion (fluid around the heart) and do get chest pains every now and then. I have Raynauds, epilepsy, Had ulcerative colitis but got so bad had to have my entire colon removed and an internal j-pouch made. I also have Sjogrens disease....I know I am forgetting something but ...ohh...the wonderful tangeletatias...all over my face arms, and entire body. But what is interesting is no harding or thickening of the skin? Go Figure. One thing you both mentioned was pain in the hip which I have all the time too. AND.....i have it mostly in the night. If I get up and walk it goes away. Its comforting to know there are others that are experiencing what you are. However, on the otherhand, I wish you didn't have to.

Does your doctor say anything about what it is then that causes these pains? I will also check out the inflamation portion and see what I can find too help.
Thanks so much all...you've been a big help.

#5 kramer57


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Posted 28 April 2007 - 01:31 AM

Hi Carol,
I have problems with pain too. It started with "mild arthritis" and bulging disks in my lower back 7 years ago, so I had that pain for a few years. Then the lower back pain kind of spread sideways to include my hips, that started about 2 yr ago. The pain is worse when I stand up for any length of time, or walk. I can only stand / walk for about 15 min. before I have to sit down because the pain gets so intense. My ankles & knees hurt now too, that also occurs when walking or climbing stairs, or if I twist them even a little. Like if I"m standing, and I turn to reach for something without moving my feet, my knee will start hurting. When I'm sitting, and I stand up, my ankles hurt when I stand & put weight on them, it's like something pulls or is stuck in the wrong spot, and I have to move my foot around to try to make whatever it is, stop pulling and get into the right position. If that makes any sense at all... I wonder the same thing you do - is it the tendons or muscles tightening? I think it is. My rheumatologist didn't explain it either - they probably don't know. It's in my upper back too now really tight, burning, stiff & painful across the shoulders & up my neck so I rarely drive anymore, it hurts too much to turn my head the way you need to when you're driving. I use an OTC cream that my husband rubs on my back 3x a day, also I take pain pills 3x a day. I've also been doing stretches on my neck, very simple ones. That has got me to where I can turn my head, slowly and painfully but I can do it!

#6 relicmom1


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Posted 28 April 2007 - 02:29 AM

Hey Carol,
I too have all sorts of pain. The worst seems to be in my hips, especially the right hip. I also have pain in both knees, both ankles, both feet, both hands and by back. My rheumatologist had done cortisone injections in my hips in the past and they really helped. I can't take an NSAID because of my stomach(I have watermelon stomach) because it causes severe pain and I risk bleeding. Sometimes I get so stiff, I literally can't stand "straight" up for awhile .I also have just general muscle aches too. I take Flexerill for the muscle pain. I take a pain med for pain in general. I am with the understanding that this disease, which ever one, that all this pain is part and parcel of it. I find that on a bad day, an electric blanket is my best friend!! It's just a big heating pad and it feels soooo good. Just remember, you are not alone in this, we're here anytime you need us!!! :)
Peace :)
Barbara aka relicmom1

#7 susie54


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Posted 28 April 2007 - 05:34 AM

Hi Carol,

I am sorry you are having so much troubler with pain. Like everyone here, it comes with the territory. When everything flares, it seems to pick a new area and then more pain. Last time it hit my neck, and shoulders with terrible tendonitis that took four months to come out of.

I did want to say the best thing for pain overall was going on plaquenil. It really made a difference. It takes awhile to kick in but well worh it. You might to talk to your rheumatologist about it.

Also, even in pain, I have found stretching exercises for the whole body really help and help keep my flexibility. I hope you feel better. Susie54

#8 kelowna52


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Posted 30 April 2007 - 07:12 AM

Hello Carol and welcome. This is all so interresting, how we can all relate to this pain problem. I get body pain on a daily basis. I just learn to live with it. Some days are worse than other's. I to, take Plaquenil and a pain med three times a day. Oh yes, my heating pad and heating blanket are my best friend's on the bad days. Something I find very interresting as well, is how all of us have bloodwork done and it's 90% negative, go figure! I just can't understand how that works. Anyway the Plaquenil is definately a good suggestion. Take care and keep posting.

Jackie S.