Posted , 6 users are following.
Started with pain in the back of my knees. Now it is all over. It feels like a muscle pulling tightly inside. Now it has become very painful and almost unbearable. I know Sjogren's can affect your nerves and muscles. Has anyone else experienced this?
1 like, 15 replies
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aitarg35939 christina12418
Posted
christina12418 aitarg35939
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Yes I have told my doctor. They did an X-ray which showed nothing. I think I need an MRI. I'm 64 years old and have been diagnosed since 2011. I did get a cortisone injection which didn't help much.
aitarg35939 christina12418
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I asked your age because I'm loath to suggest this to a 30-year old: have they checked the flow in your arteries, especially femoral & popliteal? I can't think of anything else unless you also have another AI disease (undiagnosed) or perhaps endometriosis.
I'm pretty sure I've had SS all my life. When I was young I got excruciating leg aches. No one else in the family got them, no doc could explain. They diminished over time. They weren't as expansive as your pain and wrapping my leg or legs in hot towels helped. Sounds like you're way beyond hot towels.
Wish I had something more to offer.
Mikki1220 christina12418
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christina12418 Mikki1220
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Hi Mikki!
Yes I saw my doctor yesterday and she thinks it's neuropathy. She put me on Gabapentin. Hope it works!
Thanks for reasponding!
Megheart christina12418
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Christina sorry to hear that you are experiencing distressing leg pain.
I certainly empathise with you as leg pain has been one of the everpresent discomforts that I had for almost ten years now since getting Sjögren's Syndrome. I'm not sure though that what I have experienced is the same as yours.
For me it has been and still is three layers of pain.
- Neuropathic pain - burning/freezing sensations which continue 24/7.
- Dull aching leg muscles which used to be 24/7 but now several hours per day usually between about 4am and when I get ambulating in the morning but can occur at other times.
- Muscle stiffness, particularly thigh muscles, which is still extreme and has been since 2007. This feels like I have climbed a mountain everyday.
In the early days of this condition (for two to three years), I felt that I was lifting my legs through concrete when walking....they felt SO heavy. I don't feel this often now. Additionally I had alternately severe and moderate joint pains including knees, ankles, wrists and fingers, which lasted about two years.
christina12418 Megheart
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Thank you for responding. I don't know anyone else that has Sjogren's. It's nice to talk to someone that has it also. My legs also felt heavy at times, but I am overweight! I have pain and the aching almost 24/7. I have to sit with an ice pack or a heating pad all day. Do you take any meds for it? I am on Plaquenil, are you? I appreciate all you can tell me.
Megheart christina12418
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Yes I am on Plaquenil but have only been on it for about eight months. I think it has helped my energy levels somewhat. When I went to the Rheumatologist in January though she suggested reducing the dose to 100 mgs from 200 mgs. However I think the gains I had made when on 200 mgs were lost when I reduced the dose.
Despite the fact that my symptoms started in 2007 in full force, it was not until last year (2016) that my blood markers for S.S were elevated, hence just recently having commenced Plaquenil.
christina12418 Megheart
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Hello, 2Megheart!
Plaquenil was for me a lifesaver! It has made me feel so much better, but now I'm wondering if I need to get on a stronger medication like methotrexate although I really don't like the side effects that can happen. Maybe it would help with the leg pain. I am taking 200 mgs of Plaquenil. I found that as more time went by I would notice more and more symptoms were disappearing or were greatly reduced. Hopefully you too will feel better.
Megheart christina12418
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lily65668 christina12418
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Hi Christina,
It's not your tendons, is it? I've been having a lot of pain in my upper arms for several years now. It's bad enough in the left arm to wake me a couple of times a night if I lie on that arm. I thought it was muscular for a long time, but my doctor says it's the tendons. The affected areas are painful to the touch, and every now and then I get a terrible pulling sensation and have to stretch my arm out to release it. When this happens I actually feel a click somewhere deep inside my arm, which makes me feel slightly sick but relieves the pain for a while.
When it gets too bad I treat it with cold packs. (Heat isn't good for damaged tendons.) I keep a couple of big bags of frozen peas in the freezer and wrap them in old towels. But you have to remember which is which and not eat your frequently defrosted cold-pack peas!
However, I'm starting to get a bit fed-up with it now so am thinking of asking my doctor whether there's some more effective treatment he can offer.
For a long time I didn't think it was SS related, but someone on these boards pointed out that SS will also attack the tendons, as it's a disease of connective tissue.
lily65668
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PS: Christina, I forgot to mention I don't take Plaquenil or any other DMARDs, since others have brought this up. No immunosuppressant drugs or steroids either (apart from a steroid inhaler for mild asthma).
Cowgirl918 christina12418
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christina12418 Cowgirl918
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Hi Cowgirl!
I just saw my primary doctor yesterday and she thinks it's neuropathy. She started me on gabapentin, so we'll see how it goes! I want to see my rheumatologist also because I'm wondering if trying a stronger medication like methotrexate would help me. When I started Plaquenil 6 years ago, it was a lifesaver! The pain I have actually feels like it could be muscle or tendon pain. It's hard to tell. Thank you for responding.
Cowgirl918 christina12418
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Here's hoping it works. My Sister took gabapentin and amitryptyline. It helped her sleep at night when the pain was the worse. Good luck.