Author Topic: Sjogren's and Muscle Pain?  (Read 3110 times)

Patty

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Sjogren's and Muscle Pain?
« on: June 05, 2011, 04:19:08 PM »
This year I have started having muscle pain. For the last 5 years I have just had joint and nerve pain. Now the muscles in my upper arms and legs ache terribly and are very tender to touch. I also have several areas of intense burning pain. Is this part of the Sjogrens? Any suggestions as to how to relieve it? Overall, I am in a flare and having bad joint pain too. Extra prednisone and tylenol are not touching it. Thinking I may need to break out the vicodin, but I hate to do it. Been waiting over a week to hear from my dr on what to do.  >:(
Sjogren's, Vasculitis,  IC, Hashimoto's Thyroiditis, Raynauds, Peripheral Neuropathy

lynnmarie219

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Re: Sjogren's and Muscle Pain?
« Reply #1 on: June 05, 2011, 04:59:06 PM »
It could be so many different things or it could just be your sjogrens that is acting up becasue you are in a flare. Your best bet is to get in touch with your doctor....if they haven't returned your call from last week...it's time to call again. And if they still don't want to respond then maybe it's time for look for help elsewhere (although I know what a pain that can be too).

Have you ever been diagnosed with fibromyalgia? I have fibro and sometimes this is how it affects me...with the muscle pain/weakness especially in my upper arms and legs.

Hope you get some answers and treatment for pain soon....keep us posted!
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Chickpea

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Re: Sjogren's and Muscle Pain?
« Reply #2 on: June 05, 2011, 05:42:12 PM »
Hi Patty

I'm sorry to hear that you're in so much pain.  It does sound like a SjS flare.  Like many others here, I have a lot of muscle pain as well as joint and nerve.  Sometimes it's hard to know where one ends and the other starts!

While you wait to hear from your doctor about increasing or changing your pain meds have you thought of a few gentle things you can do at home?  I find warm baths help a lot, as do heated wheat/lavender bags and hot water bottles applied to specially sore areas.  I also have a TENS machine which is great for back and leg pain. 

How is your walking?  Could you go for short walks so that your muscles are stretched gently, and don't seize up?  If I'm in my wheelchair for long periods I find it takes longer to ease the pain. 

Thinking of you - Chickpea

seren

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Re: Sjogren's and Muscle Pain?
« Reply #3 on: June 05, 2011, 06:00:33 PM »
Hi Patty,

I know when I am in a flare I get muscle pain & tenderness especially in my upper arms and I find that painkillers dont really help either.  I tend to just get on with it but take it easy when I need to.  It always goes away in the end but does flare again at some point.

Hope you find some relief soon.....

Take Care
Paula

Sandisue

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Re: Sjogren's and Muscle Pain?
« Reply #4 on: June 05, 2011, 06:01:47 PM »
Hey Patty,

I have a lot of pain in my leg and arm muscle pain too. I talked to my Rheumy about it and he said it was a part of SJ. He said it was a lot of inflammation. I have it all the time so I don't know if its a flare. Apparently the Plaquenil isn't working for me as well as he hoped. I have my next appt. this Tuesday and I'm going to ask him again about it. I'll post what he says.
I hope you feel better soon.

Sandisue

Patty

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Re: Sjogren's and Muscle Pain?
« Reply #5 on: June 05, 2011, 08:25:27 PM »
Wow, I am sorry that you all have to deal with this. I had it some last summer, but it wasn't this bad. I was diagnosed with vasculitis first and that can cause the joint and nerve pain too. I know I have a lot of inflammation right now. The warm bath sounds great. I haven't been walking because I got neuromas in my feet. I got them last time I had a bad flare too. I don't know if it is related. I'm getting a cortizone shot in the morning so maybe can do some walking in a couple days. I am feeling a little overwhelmed right now. The IC is acting up too and I just recently was diagnosed with the Sjogrens so it seems like I have a lot to process and figure out on how to deal with it. Thanks so much for your kind words. I am grabbing a book and heading for the tub.  ;)
Sjogren's, Vasculitis,  IC, Hashimoto's Thyroiditis, Raynauds, Peripheral Neuropathy

Patty

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Re: Sjogren's and Muscle Pain?
« Reply #6 on: June 06, 2011, 09:11:42 AM »
I just got back from the ortho because I thought I had neuromas in my feet again, but he said it is just arthritis and inflammation. I know my rheum is thinking I may also have fibromyalgia. The only thing that does not hurt are my knees. Sounds like the back pain is part of this too. I have never had back pain before. I am coming to the unhappy conclusion that I am always going to have pain and have to learn to live with it. I have had almost relentless head and eye pain from CNS vasculitis and Sjogrens for the last year. Well, I am going to bundle up in my UPF swim shirt and hat and go over to the community pool later for a little swimming. I think that will feel very good.

Don't you wish everyone had to experience this pain and fatigue for just one day so they would understand the huge impact it has and that we are not well even though we look well?
Sjogren's, Vasculitis,  IC, Hashimoto's Thyroiditis, Raynauds, Peripheral Neuropathy

Chickpea

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Re: Sjogren's and Muscle Pain?
« Reply #7 on: June 06, 2011, 04:40:14 PM »
Hi Patty

I hope the warm bath helped, and the swimming too.  I'm sorry you're in so much pain - you're probably right that you need to accept that you'll always have it, but that doesn't mean you can't get the best help available.  I've been wondering what sort of pain relief you've been offered.  We all find different combinations work for us, but it's worth trying a lot of different things to get the best outcome you can.

Have your doctors connected the vasculitis and/or the neuropathic pain with SjS?  Do you see a neurologist?  I also wonder whether they've considered treating you more 'aggressively' ie with immunosuppressants?

I had a sudden period of back pain about a year and a half ago.  Like you, I'd never had back pain before and couldn't believe how awful it was.  It turned out to be osteoporis - probably connected with both SjS and long-term Prednisolone treatment - and I had a series of small fractures resulting in a loss of 3" in height in a couple of months.  I learned a lot from this, mostly to take severe pain seriously and not to assume that everything was a 'normal' aspect of SjS.

Hope the swimming was fun.

Thinking of you - Chickpea

Patty

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Re: Sjogren's and Muscle Pain?
« Reply #8 on: June 06, 2011, 08:41:30 PM »
Thank you, Chickpea. The pool was wonderful. I feel so much better even after just floating and treading water a bit. I did find that the sun bothered my eyes a lot. I need to find something to wear on my eyes since I don't want to wear my good glasses in the pool. I was amazed at how much my muscles hurt initially when I tried to move around and that I have lost a lot of strength since last summer.

My doctors have only ever given me Vicodin for pain and it seems like people here use a variety of other things. I really need my rheum to help me figure that out. I don't want to take vicodin all the time. It used to be that we would just up the prednisone when things got bad, but I have not been below 15mg in a long time and was on 60 last summer. I was taking Cellcept and tried imuran. Then when it became apparant that I had CNS vasculitis, I had Cytoxan iinfusions which I finished in April. That was supposed to buy me at least 6 months but I am not so sure it is going to. It was after I had the infusions that I was diagnosed with Sjogrens by my opthamologist and I have not even seen my rheum yet to talk to her about it. Called and left a message again today.

I feel like I have so much to figure out right now and won't see the rheum until July. I am wondering if I had SjS all along. My initial symptoms were neuropathic pain and peripheral neuropathy. I do have a neurologist that I like but she has no idea what is going on because none of my other drs ever seem to send her any notes! I will see her in August.

I worry about osteoporosis too. My mother has it pretty bad. Your experience sounds so painful and once the damage is done, it is done. I hope you are doing better now.
Take care,
Patty
Sjogren's, Vasculitis,  IC, Hashimoto's Thyroiditis, Raynauds, Peripheral Neuropathy

angeldancer

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Re: Sjogren's and Muscle Pain?
« Reply #9 on: April 26, 2014, 11:58:02 AM »
Chickpea?what i have been doing is using a heating pad on the sore spots.  I was taking lots of pain meds and my liver was not happy with them so I needed to do something that could give some relief.  I also go to the gym and get in the sauna.  I spend a lot of time going in the sauna.  If you moisturize your body and use eucalyptus oil when you go, it becomes a pleasurable experience.  I know some may find it odd that I go to the gym just to use the sauna but it really helps.  I also go to the gym that has less people and has separate facilities for women because some can be very crowded and the women's is mostly empty.

I do try to stretch but that hasn't been as successful for me but hopefully I will get better at it.

Good luck.  Rooting for you
eagles flight//

Sjogrens, colonrectal cancer survivor, fibromyalgia, chronic sinus, chronic pain, kidney stones,  digestive tract issues, norco, plaquenil, ativan, ambien, lyrica, claritan, neurontin

SjoGirl

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Re: Sjogren's and Muscle Pain?
« Reply #10 on: April 26, 2014, 03:25:16 PM »
I too suffer with unexplained aching, not so much pain, but aching from head to toe. I had viruses three times over the winter and learned from my rheumy that there is a post-viral muscle pain that people can experience.

The first time I had the virus it would not let up and Tramadol would not help. I can't take Prednisone so I started MTX. That helped, but I was taking the pill form and it did a number on my gastro intestinal system. I'm suppose to start injectable MTX soon, but am balking because my recent bloodwork was so good.

Studies have shown that meditation can be a powerful pain reliever. I'm not good at it, but do practice moments of silence and rest more than I used to, that does help.
Raynauds, SjS, Anemia, neutropenia, leukopenia, thrombocytopenia, osteopenia, degenerative disc disease, Reclast, Restasis, multivitamin, Feosol (if my iron levels really dip).

Gingersnap

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Re: Sjogren's and Muscle Pain?
« Reply #11 on: April 26, 2014, 09:06:30 PM »
I haven't had burning pain but muscle pain is just a part of my life with sjogrens, for almost the past year.i have the painful tenderness in my upper arms and thighs which seems to be permanent but worsens during flares and on top of that I'll get a massively painful shoulder/neck pain/headache combo that can bed-rid me if I don't take a cocktail of meds soon enough after it develops. This disease is awful, sorry you are experiencing these things too.
36/F Dx sjs with lupus overlap, raynauds
Plaquenil,prednisone, zanaflex, gabapentin, evoxac, restasis, lidoderm patch

Ripvanann

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Re: Sjogren's and Muscle Pain?
« Reply #12 on: April 27, 2014, 08:27:21 AM »
Patty,

This sounds like neuropathy pain and it also sounds as if you need to search fo a new neuro. Not an easy task for us sjoggies. Have they given you Neurontin or Trileptol, any of the anti-siezure drugs? Don't let them give you Lyrica... just my personal (and my docs) opinon. Narcotics hep with the aches and other pains, but the burning, generally speaking, is helped by the anti-siezure meds.

Were the infusions IVIG? I only  began these a little over a week ago and haven't seen any real improvement yet. The intense burning pain I once had has been either controlled or taken over now by numbing. This is why you need a new neuro. The infusions will help stop progression.

Hope you find some relief soon. Don't let them keep throwing meds at you though. Make them tell you why and get a good neuro!

Peace and blessings,

~ Andrea
Primary SjS, Steroid Induced Cushing's Syndrome, Thyroiditis, Hyperparathyroidism, Raynaud's, Autonomic & Small Fiber NLeuropathy, Fibro. Osteoporosis, & other fun stuff associated w/ the afore mentioned. ~Meds: prednisone, Plaqu. Trileptal, Citracal D & Pain Meds that are fun when not in pain.

Tivia

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Re: Sjogren's and Muscle Pain?
« Reply #13 on: April 27, 2014, 03:56:10 PM »
Ask your doctor to check your creatinine kinase you may have a little myositis like me. I think its part of having all this.
Sjogrens, UCTD with Lupus and Scleroderma symptoms, Ulcerative Colitis, Graves Disease, Severe Gerd and failing pancreas/biliary system . Poss ANA 1:640 speckled , nerve damage in legs feet and hands, fibro, Restasis, evoxac, creon, prilosec, plaquenil, apriso, canassa, prednisione

eija

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Re: Sjogren's and Muscle Pain?
« Reply #14 on: April 27, 2014, 04:01:01 PM »
Everyone, notice that this is an old thread (from 2011) and Val has posted as a reply to it. I think Val's post should be a thread of its own.

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Female, 47, in Finland
Sjögren's, fibromyalgia, hypothyroidism (Hashi?), depression/GAD, migraines, mild Raynaud's.
Oxiklorin (=Plaquenil), Cymbalta, Bisosprolol (beta-blocker), Tyroxin (thyroid hormone), ibuprophein, Oftagel (eyes)