Managing fibromyalgia

Posted by mrs artavia @mrsartavia, Aug 29, 2013

Hello everyone, I am looking for anyone who suffers from fibromyalgia and can suggest healing methods, medication and I would like to compare symptoms. Mine feels as if I had the flu, headache, joint aches, terribly tired, pain around the glands, stomach pain, low back. If lyou can please write with any comment or suggestion for relief, or any idea what causes it I will appreciate it thank you.

I.ve fibromyalgia over 25 yrs .pain stiffness in muscles getting worse and pain in fingers terrible. Having difficulty doing basic act cities of daily living and it is getting me down. Can anyone advise me please. A. Porter

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I have been living with RA and Fibromyalgia for the past 3 years. I hate that I have to take a handful of meds everyday and sometimes I get very frustrated with it all. I see a Rheumatologist and I think the med mixture I am on is working pretty good. I take Cymbalta- if you have any bit of depression, these dx will make it worse, cymbalta helps with chronic pain- Plaquinil and Sulfasalzine for the RA, Gabapentin for the Fibro, of course then my BP went up and I had to go on a med for that as well. Now I have had to have a total hip replacement due to OA seems I can’t win.

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Hi @learningtolive2,

I moved your message to this thread so that you can connect @mrsartavia and @portera.

I also recommend connecting with @ch79 who writes about having RA and fibromyalgia here: https://connect.mayoclinic.org/discussion/fibromyalgia-20d1d0/?pg=2#post-26510.

@ch79 I bet you’re no stranger to managing multiple medications and can empathize with Learningtolive2.

Cassie
Connect Community Moderator

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I have also been diagnosed with Fibromyalgia. My dr sent me to a pain management program for Fibro and there we were taught to deal with stress via mindful meditation and were strongly encouraged to stay active and exercise. I too wake up most morning feeling like I have the flu…headache, stomach ache and nausea, body aches, irritated bowels and bladder, weak, fatigued, etc. It’s hard enough to cope with the fibro pain..mostly in my arms and back…but feeling so sick so much of the time is really depressing. The fatigue is what we have been addressing lately. I’m using a bi-pap machine and have just switched to a hospital bed with a cushy thick foam mattress and am now getting a good 8 hour sleep. But I still fall back to sleep within the first hour i get up and need a nap later on in the day as well. I used to be hyper-active, always on the go…hard to deal with the changes. Now my dr gave me a stimulant to help with the fatigue and it seemed to help for about a week, now I’m not so sure as I’ve been so tired these last couple days. Of course living in the northeast, the weather changes have been brutal this winter. I’m very affected by the barometer. I tried Cymbalta…it didn’t help and I only gained weight on it. Not willing to try Lyrica as it also contributes to weight gain. I’ve gained so much this past year due to inactivity and now my pre-diabetes has developed into diabetes. It just seems to never end.

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Ok, i hope this gets through. I dont know how these posting/socialmedia/forums work or how to tell the top from the bottom…
I was told i have fibrimyalgia in 2015 (although going thru old doc records show i was diagnosted in 2007, with pain going back to 2000) havent been given much help expeciallt since i came to Oregon in AUG to visit & got so sick with gastroenteritis i couldnt return home to work/live in So Cal. Since being here & on medicaid, since i havent been able to work. ive been told so much crap: its all in my head (somatized), its just a ‘feeling’ & SSA-RSDI will never pay disability to only a fibromyalgia diagnosis because it doesnt have a ‘test’ to clinically prove i have it & on it goes…
I also have small fiber pheripheral neuropathy & celiac genetic propensity, ( doc calls it:greater than 1 in 10 chance of celiac disease), Digenerative disc disease (which some call NORMAL FOR MY AGE), again CBD is enlarged n ive already had ercp a few years ago to open it up & now its enlarged again. Doc just did a blood test; primary bilary stenosis test.??
Has anyone else had such the run around n negating of your pain?
Dlady

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@dlady

Ok, i hope this gets through. I dont know how these posting/socialmedia/forums work or how to tell the top from the bottom…
I was told i have fibrimyalgia in 2015 (although going thru old doc records show i was diagnosted in 2007, with pain going back to 2000) havent been given much help expeciallt since i came to Oregon in AUG to visit & got so sick with gastroenteritis i couldnt return home to work/live in So Cal. Since being here & on medicaid, since i havent been able to work. ive been told so much crap: its all in my head (somatized), its just a ‘feeling’ & SSA-RSDI will never pay disability to only a fibromyalgia diagnosis because it doesnt have a ‘test’ to clinically prove i have it & on it goes…
I also have small fiber pheripheral neuropathy & celiac genetic propensity, ( doc calls it:greater than 1 in 10 chance of celiac disease), Digenerative disc disease (which some call NORMAL FOR MY AGE), again CBD is enlarged n ive already had ercp a few years ago to open it up & now its enlarged again. Doc just did a blood test; primary bilary stenosis test.??
Has anyone else had such the run around n negating of your pain?
Dlady

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Hi @dlady, and welcome to Connect.
Congratulations on posting your first message. You posted it to the right group: Autoimmune Diseases. I moved your message to the discussion thread called Managing fibromyalgia so you could meet other Connect members talking about fibromyalgia. To see the complete discussion, including your message, simply click this link https://connect.mayoclinic.org/discussion/hello-everyone-i-am-looking-for-anyone-who-suffers-from-fibromyalgia-and/ Then you can read all the messages from the earliest to the most recent.

I’d also like to introduce you to a few other members who have shared about their experiences in other discussion threads:

– In “Chronic Pain – Let’s talk” https://connect.mayoclinic.org/group/pain/ you’ll meet @tompet, @briansr and @ladyjane85 talking about fibromyalgia and pain management.
– In “Anyone here dealing with peripheral neuropathy?” https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/ you’ll meet @bobsconnect @johnbishop and others

I think you’ll find that many people with chronic pain sharing on this forum experience the “run around” you refer to and that pain is largely misunderstood by those who don’t experience it, including medical professionals. How are you getting your doctor(s) to listen to you and work with you?

Liked by salena54, barbara43

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@dlady

Ok, i hope this gets through. I dont know how these posting/socialmedia/forums work or how to tell the top from the bottom…
I was told i have fibrimyalgia in 2015 (although going thru old doc records show i was diagnosted in 2007, with pain going back to 2000) havent been given much help expeciallt since i came to Oregon in AUG to visit & got so sick with gastroenteritis i couldnt return home to work/live in So Cal. Since being here & on medicaid, since i havent been able to work. ive been told so much crap: its all in my head (somatized), its just a ‘feeling’ & SSA-RSDI will never pay disability to only a fibromyalgia diagnosis because it doesnt have a ‘test’ to clinically prove i have it & on it goes…
I also have small fiber pheripheral neuropathy & celiac genetic propensity, ( doc calls it:greater than 1 in 10 chance of celiac disease), Digenerative disc disease (which some call NORMAL FOR MY AGE), again CBD is enlarged n ive already had ercp a few years ago to open it up & now its enlarged again. Doc just did a blood test; primary bilary stenosis test.??
Has anyone else had such the run around n negating of your pain?
Dlady

Jump to this post

Run around is common. I have had fibro for many, many years, but since
my back issues and surgeries have been worse I cannot bother with it –
I react to all meds. I have been thru 5 surgeries on back and since I
react to meds of many kinds I bear up to 9 pain. I still drive when
needed but am in Independent Care in a facility. I spend much of my
time on the bed in a half recline. I hear you and feel for you. I am
85 and they think I can’t have that much pain bec I look so young and
I always fix up to keep my own morale up. Last pain management dr said
there is nothing else they can do for me….Keep yor brain going with
reading, meditation, and whatever you love. My best.

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@dlady

Ok, i hope this gets through. I dont know how these posting/socialmedia/forums work or how to tell the top from the bottom…
I was told i have fibrimyalgia in 2015 (although going thru old doc records show i was diagnosted in 2007, with pain going back to 2000) havent been given much help expeciallt since i came to Oregon in AUG to visit & got so sick with gastroenteritis i couldnt return home to work/live in So Cal. Since being here & on medicaid, since i havent been able to work. ive been told so much crap: its all in my head (somatized), its just a ‘feeling’ & SSA-RSDI will never pay disability to only a fibromyalgia diagnosis because it doesnt have a ‘test’ to clinically prove i have it & on it goes…
I also have small fiber pheripheral neuropathy & celiac genetic propensity, ( doc calls it:greater than 1 in 10 chance of celiac disease), Digenerative disc disease (which some call NORMAL FOR MY AGE), again CBD is enlarged n ive already had ercp a few years ago to open it up & now its enlarged again. Doc just did a blood test; primary bilary stenosis test.??
Has anyone else had such the run around n negating of your pain?
Dlady

Jump to this post

Hi @dlady, if you use Facebook you might consider joining the Our Neuropathy Friends group which has over 3000 members and growing. It’s a great support group. One of the posts that may help you was about a lady who helps people navigate through the insurance mess for pain issues. You can read more here: https://www.statnews.com/2016/04/25/insurance-warrior/. Good luck and know that you are not alone. God Bless!

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@dlady

Ok, i hope this gets through. I dont know how these posting/socialmedia/forums work or how to tell the top from the bottom…
I was told i have fibrimyalgia in 2015 (although going thru old doc records show i was diagnosted in 2007, with pain going back to 2000) havent been given much help expeciallt since i came to Oregon in AUG to visit & got so sick with gastroenteritis i couldnt return home to work/live in So Cal. Since being here & on medicaid, since i havent been able to work. ive been told so much crap: its all in my head (somatized), its just a ‘feeling’ & SSA-RSDI will never pay disability to only a fibromyalgia diagnosis because it doesnt have a ‘test’ to clinically prove i have it & on it goes…
I also have small fiber pheripheral neuropathy & celiac genetic propensity, ( doc calls it:greater than 1 in 10 chance of celiac disease), Digenerative disc disease (which some call NORMAL FOR MY AGE), again CBD is enlarged n ive already had ercp a few years ago to open it up & now its enlarged again. Doc just did a blood test; primary bilary stenosis test.??
Has anyone else had such the run around n negating of your pain?
Dlady

Jump to this post

I have a GP for BP and cold meds and see him every four months. I have a
rheumatologist. who I see once a year for osteoarthritis, sarcoidosis,
fibromyalgia, emgus,and other immune problems I have(can’t even remember
them all, he gives me soma which is all he can do until I have a flare-up
which works, or helps for fibromyalgia when I get stuck in bed off and on
every month. I’m running a 99.9 today, that’s how I know one of them is
slapping me around a bit. No chills just get real hot and eventually take a
Tylenol. These low grade temps can last 2 to 4+ days with my longest being
over 3 months. That’s when I take Prednisone if I can drive the 110 mile
round trip. My pain doc is an anesthesiologist who gives me narcs that
don’t help much but I take what I can get. He’s the cut happy Dr, the best
one I have found in 33 yrs but I’m refusing any more surgeries unless it’s
a have to which my last nine have been. His office and him are getting a
bit odd which I don’t want to get into now. He flys in surgeons from out of
state and has some on staff.I have an eye dr who got my sarcoidosis
diagnosed, it took 3+ years.I don’t even know why i’m typing this much but
I’ve seen alot of Drs. and these are the best group I’ve found. It only
took approximately 28 years to find them. These are the kind of Drs you
might need. When they found out I had EMGUS I had a cancer doc who just did
blood work and I got someone else to do that. Google MGUS OR EMGUS and
read, it’s very interesting but dangerous. I’m done. I don’t know if I
helped you or just confused you. Have to stop now. Thanks. briansr

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@dlady

Ok, i hope this gets through. I dont know how these posting/socialmedia/forums work or how to tell the top from the bottom…
I was told i have fibrimyalgia in 2015 (although going thru old doc records show i was diagnosted in 2007, with pain going back to 2000) havent been given much help expeciallt since i came to Oregon in AUG to visit & got so sick with gastroenteritis i couldnt return home to work/live in So Cal. Since being here & on medicaid, since i havent been able to work. ive been told so much crap: its all in my head (somatized), its just a ‘feeling’ & SSA-RSDI will never pay disability to only a fibromyalgia diagnosis because it doesnt have a ‘test’ to clinically prove i have it & on it goes…
I also have small fiber pheripheral neuropathy & celiac genetic propensity, ( doc calls it:greater than 1 in 10 chance of celiac disease), Digenerative disc disease (which some call NORMAL FOR MY AGE), again CBD is enlarged n ive already had ercp a few years ago to open it up & now its enlarged again. Doc just did a blood test; primary bilary stenosis test.??
Has anyone else had such the run around n negating of your pain?
Dlady

Jump to this post

Thanks Alyse, I’m SO frustrated with these docs! All I’ve gotten so far is Lyrica n yesterday doc put me on cymbalta, also take Vicodin but there gettin very particular bout that one ( weening my sister OFF because of governmental overreach & she has 3 back fusions!) Denied neuroma/bunion surgery, denied epidural shot for my back. Waiting for physical therapy but I’m kinda thinking they will deny that too.
My doc says there is now way SSA-RSDI will award me disability based on fibro alone, it’s just a ‘feeling’ he says. In pain & so tired of it
Dady

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No, all the info I can get helps, thanks!

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Wow!!!! In your 80s and you sound young in your posts that I have read. My
mom is 77 yrs old and has always been a beautiful woman and also looked
younger than she was. But lately she looks bad because of her Alzheimer’s,
she forgets to eat are bath. My fourth brother lives with her, but he’s not
in the best of shape because of the life style he lived all his life. We
let him move in after I put him in rehab. He was on meth, we couldn’t find
him so I went looking and found him under a bridge, me and my sister
brought him for help while we were going to rehab he told us that he tried
to take his life and took so much meth that he felt his brain blow up and
saw a bright light. He has been clean know for a year, but he has never
been the same. My older brother helped him get a SSI and Medicare. I do my
best to go to moms every other day to make sure the house is clean and they
have bathed. My daughter works at the hospital and home health and if I
can’t get mom to bath she can, she has a compassion and a way with the
elderly and they love her. I hope you get the best help that’s out there,
our elders have earned it. salena54

salena

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I’m so sorry that you are going through so much. I don’t know how Lyrics
and cymbalta makes you feel, I couldn’t take it. It made me feel irritable
and I would be snappy, my oldest granddaughter but like this, mowmow has an
attitude of the worst kind and it just don’t suit her. So they took me off.
My Doctor has to keep trying different things because I can’t take just
anything. You might have to get you a lawyer to be awarded your disability.
The lady that is doing my case told me to get a lawyer, because when they
found out that I still do my job and go to the University when there’s new
research in psychology and counseling. They said if I can do school work
I’m not disabled. She told me that they have people on SSI and disability
that go to trade school, I’m not in school anymore, I just go to for what’s
new. I haven’t found a lawyer yet, it get discouraging sometimes and they
can make you feel really cheap and low class. Hope you get what you
deserve, and what you have paid in. We need to fight for this because I
fear it won’t be an option before long, no one will be able to get it.

salena

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What you describe I know very well. Just once I would like to wake up without pain and not feel I could do with more sleep. Thankfully my doctor tries his best. I have restless legs also with all the other things you have. My doctor prescribed Sinemet for my legs. It is a Parkinson medication-but I can still get where my legs jerk and the pain is terrific. So the best thing I have is a narcotic. If I don’t take pain meds. to go to bed I am up trying to walk the feeling off and waiting for the pain meds. to take effect. Depression is a hard thing to manage so I have antidepressants too. My doctor feels that older people don’t seem to get addicted as quickly younger people do. And what the heck at 86 what does it matter. Although I haven’t so far. My children think I should try medical marijuana but my doctor says the pain killer I have is better for me.One thing I have found out when in pain rocking myself back and forth on the bed helps. Also I have knelt down as in prayer and put my head and shoulders well up on the bed and actually slept. I can’t get in and out of a tub but before when I could use the tub I have found relief of pain just lying in the warm water. Fibromyalgia is a miserable thing and can be a handicap as far as having to work. I keep saying to myself I am glad it is not cancer.It doesn’t help the pain but –you try anything when you have Fibromyalgia. It is the tiredness that beats you even if you have killed the pain. I just know some days I will have to sleep all day and then go to bed and sleep all night. I haven’t helped much but it helped to talk about it. Take care. By the way Lyrica caused me more pain and I was really depressed. Scary.

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