Author Topic: Now I must add fibromyalgia to my list of ailments! Noooo!  (Read 170 times)

deeindiana

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Now I must add fibromyalgia to my list of ailments! Noooo!
« on: December 02, 2018, 10:29:08 PM »
Went to my annual appointment with the rheummy at the U of M Med Center with the added complaint of terrible muscle pain, miserable sleepless nights and 50 weight gain. She said my blood test showed my SjS markers were all stable (good news) and she was certain it is fibromyalgia. Yes, I'm glad to put a name to it but geeze...one more thing!! I look at her instructions for fighting it and its so overwheming. Cut out sugar and gluten - which are the foods I crave the most! Exercise - but I can barely get through my work day! Get rid of stress - my husband has stage four kidney cancer! I currently take 50mg of Zoloft and Welbutrin and the rheummy suggested discussing a change in those meds with my family doctor. Does anyone have advice or words of wisdom? I feel helpless and with my normal "Blue Christmas" season fast approaching its even worse. Thanks all.
Diagnosed June 2010.
Rheumy at University of Michigan Med Center. Age 52
Severely dry mouth & throat with difficulty swallowing, fibro, allodynia of the scalp.
Medications: Atenolol, Dexilant, Zoloft, Zocor, Flaxseed oil, Vit D, Nasonex, Plaquenil
I am my own worst enemy...

Joe S.

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Re: Now I must add fibromyalgia to my list of ailments! Noooo!
« Reply #1 on: December 03, 2018, 06:10:18 AM »
My first Dx was Fibromyalgia triggered after an auto accident in 1983 that caused a lot of damage to my neck and back. Most of my pain management suggestions work well with it and pain management is a key to being able to keep going. Carrot Juice, Reflexology, breathing and meditation seemed to work the best. Tai Chi and isometrics help to keep things loose. Weights did not work. The fascia muscles seemed to provide most of the triggers. Hempz lotion may help as it relaxes these muscles for me.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
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warmwaters

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Re: Now I must add fibromyalgia to my list of ailments! Noooo!
« Reply #2 on: December 03, 2018, 04:05:59 PM »
So... sometimes we have to do what we can, and eventually get the the harder stuff. Getting stress out of your life isn't going to be easy with your husband sick! But do what you can to help a little bit with the stress - meditate, or if that's too much, just spend 5 minutes quietly breathing twice a day. If a support group would help, try to get to one (assuming you have time). Or a hot bath, or a half hour of listening to some relaxing music.

Think in terms of "art of the possible". Cut a few sugary things out of your diet. Cut out as much dairy as you can. Food changes usually require also figuring what you ARE going to eat, and developing new habits around shopping and cooking. Given you have a lot else going on, give yourself time to think about if you didn't eat a donut, what else might taste good.  etc. You can think about it in terms of meals, too. Maybe start by changing one meal so that it has less of the no-nos. Or if it's snacks that are your downfall (definitely mine!) are there ways to make sure you have something to eat that isn't a sweet.

So break it down in bits, and do some now, and gradually work yourself into new patterns.

In fibro, exercise EVENTUALLY helps, but not necessarily immediately. Google fibro and exercise, as I don't remember the details!

Hang in there. You can't "fix it all at once". It will take time.

 
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

SjoGirl

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Re: Now I must add fibromyalgia to my list of ailments! Noooo!
« Reply #3 on: December 04, 2018, 01:23:10 PM »
Dee I am so sorry to hear this. I have had times of great stress in my life and know that I ache much more during those times.

As well I have asked my rheumy about fibro, he says everyone has a bit of it, that made me feel better.

I agree with advice such as trying to control stress though you wonder how you can do that given your husband's situation. Earlier this year for about six months I drove back and forth to be with my sister and my niece as my sister was passing from cancer. I had a horrible flair after my sister passed and am currently take Celebrex because I could not shake it on my own.

Therapy can help if you have the time and resources. Meditation or just taking a walk can help if you are able to get out. I am not one to walk in the cold but have been doing so this winter and have found it to be a godsend.

I wish you strength, courage, and to the degree possible peace.
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.

deeindiana

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Re: Now I must add fibromyalgia to my list of ailments! Noooo!
« Reply #4 on: December 04, 2018, 02:43:30 PM »
Thank you all. You are right -- I need to just tackle a few small things at a time. My rheummy prescribed gabapentin but I've been afraid to take it. The number one side effect is weight gain!
Diagnosed June 2010.
Rheumy at University of Michigan Med Center. Age 52
Severely dry mouth & throat with difficulty swallowing, fibro, allodynia of the scalp.
Medications: Atenolol, Dexilant, Zoloft, Zocor, Flaxseed oil, Vit D, Nasonex, Plaquenil
I am my own worst enemy...

SjoGirl

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Re: Now I must add fibromyalgia to my list of ailments! Noooo!
« Reply #5 on: December 05, 2018, 05:42:42 PM »
dee I did gain some weight on gabapentin, though what I figured out after several go-rounds was that it was water weight (at least for me). Once I stopped taking the drug I went to the bathroom quite a bit for about a week then lost all the "weight" (which was really more like swelling up).
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.

Deb 27

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Re: Now I must add fibromyalgia to my list of ailments! Noooo!
« Reply #6 on: December 05, 2018, 08:24:21 PM »
Dee, it sounds like you have an awful lot going on in your life. Sorry to hear about your husbands cancer. Do you think the stress is triggering the fibro? I think the meds just patch up the pain and don't cure. Stay hydrated, eat lots of veggies and get as much sleep as you can. Maybe some warm epsom salt baths would help? Sounds simple but it works. Also, some magnesium supplements might help. I take the chelated kind so it doesn't give me diarrhea. Good luck to you!
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.