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BUTTERFLYGAIL's Photo BUTTERFLYGAIL Posts: 18
1/22/17 2:49 P

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I have fibromyalgia, psoriatic arthritis, degenerative disc disease (have a fusion), IBS, CFS. I can barely climb 2 steps up into my house. I hurt from head to toe. Have had several surgeries, most recently 3 elbow surgeries to fix torn tendons, ligaments and muscles. I get weekly massages, but my gal says every week something else is super tight and sore. Even my jaws hurt terribly. I'm taking Humira shots 2x a month, Lyrica, muscle relaxers, celebrex along with meds for anxiety and GERD.

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VALLEYLILYOWL's Photo VALLEYLILYOWL SparkPoints: (11,609)
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4/21/16 4:41 P

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Thank you for the article. I hope to read it soon.

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JENNIW70's Photo JENNIW70 Posts: 5,763
4/21/16 12:03 A

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ValleyLilyOwl, it is very common for people like us (esp CFS-ers) to have sensitivity to medicines. It's recommended anytime we try something new to start at the lowest dose, and build up slowly to test for problems.

I also have degenerative disc disease in my neck and that often means headaches for me. Here is a link about CFS:
solvecfs.org/what-is-mecfs/

Hope it helps

Co-leader Christians with Fibromyalgia
Co-leader Chair Exercise Team


"But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." - Is. 40:31

"For physical training is of some value, but godliness has value for all things, holding promise both for the present life and the life to come." - 1 Tim. 4: 8


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VALLEYLILYOWL's Photo VALLEYLILYOWL SparkPoints: (11,609)
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4/16/16 2:17 P

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I haven't been diagnosed with CFS, but I do feel that I have it. I do have diagnoses for hypothyroid, chronic migraine, osteopenia, osteoarthirtis in my back, restless leg syndrome, Reynaud Syndrome, degenerative disc disease, fibromyalgia and now cataracts.

I also experience tremors and double and blurred vision (not related to the cataracts). These seem to bother me the most, for some reason. I was just started on large doses of B2, magnesium and Co-Q10. My muscle relaxers for RLS increase the double vision.

I have an entire page (computer printed, size 12) of meds I have tried and had bad reactions/intolerances to. At this point, I am ready to go off all meds and take my chances.....

However, I still thank and praise God always for the family and other many blessings He has bestowed upon me.....

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EBURGITE's Photo EBURGITE Posts: 3,436
2/1/16 9:15 A

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i've been dealing with fm for over 17 years. there are things that i've done that have helped. for me, the thing that's helped the most is taking co-q-10. www.nyrnaturalnews.com/pain-2/2013/0
4/
studies-show-benefit-of-coq10-in-fibR>romyalgia/
it made my pain level bearable. the next biggest thing is getting sleep. if i don't sleep, it's bad.
i've managed to get things under control for the most part.
i do remember when i'd get bad flares in the beginning, the pain would come on fast, and the depression would come right along with it....not as a secondary response, but like a conjoined twin. :P

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CAZJOY1's Photo CAZJOY1 Posts: 1,995
11/5/15 9:18 P

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I've been thinking about how often depression seems to exist with fibro ... so interesting reading this thread today

I can relate to some of the other challenges including anxiety and depression; costochronditis seems to flare up a lot, and I think the IBS is a strong likelihood as well as several other health issues

Edited by: CAZJOY1 at: 11/5/2015 (21:18)
Lib

Life is beautiful
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Taking one day at a time


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JENNIW70's Photo JENNIW70 Posts: 5,763
6/18/15 12:23 A

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Dazzed,

"CFS IS a pain, isn't it?" Yes, yes and yes! haha I love your analogy of the rechargable batteries. Mine must be old, because it seems my batteries never hold their charge for too long either. emoticon

To help others understand our energy "shortages," I give them the "spoon theory" by Christine Miserando, and there's a newer one now called the "Bean theory." I really like the bean theory because it talks about having 3 beans per day, and if you need more beans (i.e. energy), you have to borrow a bean or two from other days.

Edited by: JENNIW70 at: 6/18/2015 (00:25)
Co-leader Christians with Fibromyalgia
Co-leader Chair Exercise Team


"But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." - Is. 40:31

"For physical training is of some value, but godliness has value for all things, holding promise both for the present life and the life to come." - 1 Tim. 4: 8


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DAZZEDJM's Photo DAZZEDJM Posts: 244
6/16/15 2:58 A

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My hips & knees are worst for arthritic pain. I have a problem with my neck since a 7 foot metal locker in the staff room fell on me!! My shoulders are not good anyway. Due, maybe, by 36 yrs in the health service but also By my condition. CFS IS a pain isn't it? No energy at times. It's like we run on rechargeable batteries when everyone else is on "proper " batteries! When rechargeable batteries run out they just go suddenly, sometimes without warning! Thinking about it I believe that underlying conditions are all connected.

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JENNIW70's Photo JENNIW70 Posts: 5,763
6/16/15 12:38 A

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That's a very good question Dazzed. I'm not sure. I actually don't have fibro myself. (I know, ironic that I should be leading a team for fibro then, right?) But I do know quite a bit about it. Some of the mechanisms that they believe are involved with fibro might make it more likely to have arthritis pain too? What do you think?

Where do you have arthritis? I have had arthritis confirmed in my lower back, neck and knees. Not fun for sure! I'm in my forties, so I'm not looking forward to getting older. haha It's really hard to move when you feel so achy and pained all the time. I'm sure the fibro makes it worse for you. My CFS makes it really hard to have the energy too. That is more of an issue than even the pain. Taking one day at a time here. How about you?

Co-leader Christians with Fibromyalgia
Co-leader Chair Exercise Team


"But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." - Is. 40:31

"For physical training is of some value, but godliness has value for all things, holding promise both for the present life and the life to come." - 1 Tim. 4: 8


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DAZZEDJM's Photo DAZZEDJM Posts: 244
6/14/15 5:53 A

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I read your post & thought I had written it!!! I have the same named conditions as well as Fibro! I have CFS/ME & arthritis. Is there a connection or are we just unfortunate?

Edited by: DAZZEDJM at: 6/14/2015 (05:55)
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JENNIW70's Photo JENNIW70 Posts: 5,763
6/13/15 6:23 P

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As if fibromyalgia were not challenging enough, we all often suffer from additional challenges and medical conditions. I have CFS/ME, arthritis and depression. I know others have had arthritis, irritable bowel, rheumatoid arthritis, thyroid issues, depression, anxiety, lyme disease, etc.

What do you have to deal with besides fibro?

Co-leader Christians with Fibromyalgia
Co-leader Chair Exercise Team


"But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." - Is. 40:31

"For physical training is of some value, but godliness has value for all things, holding promise both for the present life and the life to come." - 1 Tim. 4: 8


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