Author Topic: muscle and tissue pain help  (Read 578 times)

trc1962

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muscle and tissue pain help
« on: January 01, 2020, 05:52:03 PM »
Hi. I have posted on my muscle pain before and I am still trying to solve some issues. I am a health and fitness teacher and my life revolves around movement. When I do any workout type activities I get sick. I did a 20 minute mild workout on Sunday night and felt great all day Monday, but in the night my muscles hurt near my scapula, shoulders and neck. I have spent the past couple of days on the couch feeling chilled and just "sick." This has become a pattern.I always have stiffness in my lower back and buttocks each day. My blood work for early Dec was good; normal crp and esr. I am on myfortic and low dose naltrexone. polymyositis brings a raised esr and I don't have that. Thank you and happy new year.

irish

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Re: muscle and tissue pain help
« Reply #1 on: January 01, 2020, 10:55:46 PM »
Polymyositis brings an elevated ESR????  Have you been doing searches for diseases and are ruling this out???

I don't know how much you have been doctoring but the first thing I would suggest is that you keep a journal of your actives and daily schedule and health events. Have you taken your temperature?? I don't find much info in your post to help me with ideas. ARE you fatigued? How long has this gone on? Do you have these health issues when you don't exercise? What other health issues do you have?

If you have more information maybe one of us could give a better answer than I have. Be sure to add more info on the next post. Thanks. Irish

Maria3667

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Re: muscle and tissue pain help
« Reply #2 on: January 05, 2020, 02:16:43 AM »
Hi Trc,

I often get the same type of pain after doing physical excersise, especially if it's been intense. Accept this now as part of life living with Sjogren's.

But there are many over the counter supplements that can abate this. Trouble for me is they always bug me with side effects like anxiety, weight gain, insomnia, etc. The 'favorite bunch'.

Cheapest and most effective is probably green tea extract. I buy the extract from Holland & Barrett and make my own capsules. Side effect for me is worse dry mouth & slight insomnia.

Good luck!
52. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis ('18), frozen shoulder ('19). Pilocarpine, thyroid meds, 25mg quetiapine, 5% testosterone. Allergies: sodium hydroxide, nickle, methylisothiazolinone, latex

vrystaat

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Re: muscle and tissue pain help
« Reply #3 on: January 05, 2020, 04:37:37 PM »
Your Rheumatologist must get some lab tests. Most important is the Creatinine kinase.
I have had acute Polymyositis for years, but has recently flared up to the extreme.
Beware that the ESR, CPK and C-Reactive Protein can be normal, even in severe cases.
You may need a muscle biopsy.
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

irish

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Re: muscle and tissue pain help
« Reply #4 on: January 05, 2020, 09:24:07 PM »
I am just waiting to see if you have found out more. When I was younger I would try to have a schedule of exercising and I just couldn't do it. It would get weaker and nauseated. I was just frustrated about the whole thing. When I got diagnosed with myasthenia gravis in 2006 (a few years after Sjogrens diagnosis) my neurologist told me no exercise except for very passive stuff. I also can't use a tread mill due to my weakness and balance issues. She said she has had patients fall and get injured badly.

You know, when one wits down and makes a list these darned autoimmune diseases sure can take the fun out of life. I bet if I won the lottery I could have fund spending money though. Irish

trc1962

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Re: muscle and tissue pain help
« Reply #5 on: January 07, 2020, 08:26:24 PM »
My ESR and Crp are often normal and when raised mildly. In the past they have checked the creatnine and that was normal also. I like my rheummy very much but it is hard for him to know what direction to go in with the negative blood work. This type of body pain is new in the past 15 months or so. I see rheummy later this month and am going to ask for some more help, ideas to address the discomfort. I have done pretty good with fatigue but lately I can fall asleep standing up after 8 or 9 hours of good night sleep. I also have had some weight loss which is kind of wierd with Christmas and my appetite isn't good lately. I think my biggest complaint is the pain in my scapula and rib area of my back. Autoimmune if frustrating for sure. I will update after the appointment. Thanks.

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irish

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Re: muscle and tissue pain help
« Reply #6 on: January 07, 2020, 08:41:17 PM »
I am wondering if you are telling all your docs about the pain in your back and rib area plus the weight loss. These could be very significant symptoms. Also, the fatigue may be related. Remember that not all our ailments are related to autoimmune. I found that out the hard way. Irish

jazzlover

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Re: muscle and tissue pain help
« Reply #7 on: January 22, 2020, 04:42:59 PM »
. polymyositis brings a raised esr and I don't have that.

More correct to say that a high ESR MAY INDICATE Polymyositis.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease