Author Topic: Medical Mystery -- Stiffness/Tight Muscles Anyone?  (Read 703 times)

SjoGirl

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Medical Mystery -- Stiffness/Tight Muscles Anyone?
« on: January 10, 2018, 05:05:26 PM »
So I went off of Gabapentin a few months ago due to side effects. I felt great for several months and now am at times so stiff and my muscles are so sore I can't stand it. My fatigue waxes and wanes and when it waxes is not quite, but is starting to stop me in my tracks.

Does anyone else suffer from this extreme stiffness and tight muscles along with pain? FYI I've been checked for M.S. I'm not weak and I have range of motion, I'm just achy, sore and my muscles are extremely tight. I also don't have great balance left to right (I'm oddly better front to back) but was able to walk up a long hill today.

I do also have some minor swelling of hand joints and my wrists ache like the dickens (as do the base of my thumbs).

This has gone on off and on for years, since I got sick really (nearly 10 years). I and doc are still trying to figure out what is happening. I will have blood work done before going on steroids, which I want to avoid doing if I am able.

Thoughts?
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

Maria3667

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Re: Medical Mystery -- Stiffness/Tight Muscles Anyone?
« Reply #1 on: January 11, 2018, 03:49:19 PM »
Hi Sjogirl,

I experience similar pain & stiffness to yours. So far I've found that there are a many potential supplements, but many give me unexpected side effects such as anxiety.

So far I've found green tea extract excellent against typical weird Sjogren's pain such as muscle pain and stiffness - works quickly too like within first day & is cheap if you fill your own capsules. However, I can only stomach half a capsule because more gives me insomnia and increases dry mouth. So better to start off low & slow.

Good luck!
« Last Edit: January 29, 2018, 01:38:08 AM by Maria3667 »
50. Lyme's (1998), Sjogren's (2003), hypothyroidism (2004), osteoarthritis (2016), DES-daughter, GAD. Pilocarpine, natural thyroid hormones, 25mg quetiapine, low dose testosterone, 2.5 mg dhea, supplements. Endometriosis, cherry angiomas, macules. Allergies: nickle, methylisothiazolinone, latex

Sharon

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Re: Medical Mystery -- Stiffness/Tight Muscles Anyone?
« Reply #2 on: January 11, 2018, 04:38:50 PM »
How long were you on Gabapentin for before you stopped SjoGirl?
The pain you describe reminds me of my RA pain and I see in your details that you were diagnosed with RA as well.
Could it have been that the Gabapentin was just covering up your pain before?
I take a biological med for the RA and it has literally saved my joints (and my sanity).
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

SjoGirl

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Re: Medical Mystery -- Stiffness/Tight Muscles Anyone?
« Reply #3 on: January 17, 2018, 04:38:53 PM »
Hello Sharon,

Ah biologics, I've asked my rheumy about them, but he wanted to try other options first because I am so medication sensitive. I do believe meds often just mask symptoms or mitigate them, but don't address the real issue. That said, my SED rate was recently tested and is normal as normal can be (really normal).

Then again, my Hemoglobin was low, so was hematicrit, so was RBC, and WBC (WBC always low). He did not check RF which I realized after I got results. I wonder if I'm not getting enough oxygen to my muscles or they are not repairing themselves. I need to ask my rhuemy what he thinks but have been holding off because I'm having carpal tunnel surgery tomorrow.

As I just told Irish in a post about shoulder pain that I have been having I had tears in my labial muscles years ago and would say that this pain is in some ways similar, just much more severe. I have been too occupied prepping for surgery to pursue this + my husband has been coughing for four weeks and my sister is dying from cancer and I am working several jobs so I can only handle so much.

I see my rheumy in March and will ask again about other treatment options. Thanks for the thoughts and for your support.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

Judie P

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Re: Medical Mystery -- Stiffness/Tight Muscles Anyone?
« Reply #4 on: January 20, 2018, 12:34:50 PM »
Oh man, this post is exactly what I needed today.  Been dealing with what I believe is stiff muscles from the waste down.  I began having this symptoms two weeks ago.  Went to see my PCP who did an anal and pelvic exam and found nothing.  He was more worried about my blood pressure.  Started a blood pressure medicine last night and woke up with muscle cramps in both legs, having to urinate all night, and this morning the pain was so bad I could not walk.  I did find out last month that I had multilevel arthritis, degenerative disc disease and stenosis in C5, 6 & 7 in my neck.  No one seems to want to do an MRI on my back.

Anyone out there have this problem when they started amLODIPine (Norvasc)?  Anyway, I feel for you and I think this is all Sjogren's related.  I am going to make an appointment with my rheumy for this mess.  Pain is horrible!!!!  I will keep looking on this post for similar advice.

Primary SJS, SS-A >8, fibromyalgia, neuropathy, asthma, Effexor, Vitamin D 1,000mg, magnesium, Motrin, Ayr Nasal Gel, Ayr nasal mist, Optique 1 eye drops

bluegardenia

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Re: Medical Mystery -- Stiffness/Tight Muscles Anyone?
« Reply #5 on: January 22, 2018, 11:30:19 AM »
i take a medicine called NORMAST, it contains palmitoylethanolamide, and its great for pain. no side effects. please try to google  this substance
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds

SjoGirl

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Re: Medical Mystery -- Stiffness/Tight Muscles Anyone?
« Reply #6 on: January 24, 2018, 10:19:37 AM »
Judie my spine is a wreck from top to bottom -- degenerative disc disease in C4, 5, and 6, lower lumbar disc issues, stenosis, osteoarthritis and so on.

How did I find out about some of it? Well, at first I ended up in the ER several times for severe shoulder pain and migraines (not a heart attack, rather pinched nerves). Then years later I started feeling like I couldn't breath, like my rib cage won't expand and I have having terrible pain in my lower back. I was also having issues with pain going down my leg.

It took several years and many doctor visits before my whole spine was MRI'd and a fair amount has been xrayed as well. One thing I learned early on is that different parts of the spine are different MRIs for insurance purposes -- docs will only ask for one at at time lest insurance reject a request. Needless to say this is a real dis-service to people like us.

One problem I don't yet have is high BP so I'm not much help regarding the medication. Best wishes to you, I understand the heck you're living in.

Bluegardenia, thanks for the medication suggestion. My spouse keeps wondering about medical marijuana, I plan to look into it.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

Judie P

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Re: Medical Mystery -- Stiffness/Tight Muscles Anyone?
« Reply #7 on: January 24, 2018, 02:32:59 PM »
Sjodry,  I found your latest post interesting.  The only way I found out about my neck was by going to ER as well.  The past two days I have been having this tightness in my chest when I breath in and it makes me cough.  I can feel it in the middle of my back as well.  I know my whole back is messed up, and I guess I am going to have to be patient with those MRIs I want.

I just want to be able to walk enough to get some exercise.  Ugh.
Primary SJS, SS-A >8, fibromyalgia, neuropathy, asthma, Effexor, Vitamin D 1,000mg, magnesium, Motrin, Ayr Nasal Gel, Ayr nasal mist, Optique 1 eye drops

vrystaat

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Medical Mystery -- Stiffness/Tight Muscles Anyone?
« Reply #8 on: January 26, 2018, 10:50:12 AM »
I saw this post and wanted to reply. If you have pain and stiffness in your muscles, please have your Rheumatologist or GP get a "Creatinine Phosphokinase" test.
Seven years ago, I did just that and it was hugely elevated. It was so high that it affected my kidneys. It's nephrotoxic. The cause is Polymyositis, a muscle disease associated with SS.
A high CK (Creatinine Phosphokinase) is dangerous and should be treated. An internist saw this 20 years ago, and did nothing. This has caused great difficulty to me. Send me a private message if you want more info. ???
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage

SjoGirl

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Re: Medical Mystery -- Stiffness/Tight Muscles Anyone?
« Reply #9 on: January 28, 2018, 05:10:52 PM »
Hi Vrystaat -- I believe my Creatine was tested in a recent round of tests to try to ID the cause of my pain and tightness and it was either normal or low. I do know that my kidneys are working just fine based on the test results.

I also looked at myositis as a possibility, after researching it I suspect that spasticity is the more likely culprit. My neurologist wondered when he first started seeing me if I might have M.S. but had since discounted it, but maybe it's time to revisit that. I do have neuropathy though can't imagine that is the cause of the pain (then again, maybe so).

Thanks to others who weighed in, it's an huge help to connect with people who understand.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.