Among Friends

[JoyFilled Warrior]

@Sassy7356 wrote:

Most of you know I suffer daily with fibro and have for the past 15+ years on a daily basis along with neuropathy and arthritis in my knees and back.  I was just diagnosed with osteosposis in my hips and osteopenia in my wrists.  My health never seems to get better but I deal with it every day.  I wonder if some of you in pain might also have fibro?  Just a thought.  

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@Sassy7356   I hope you dont mind me starting another thread specifically for Fibro, et al?

                         ~ ~ ~

OHHH Definitely @Sassy7356 !!    !! 

I've got the whole package, 

Sucks, big time, doesnt it!

Even has an effect on my brain, memory, thought process, critical thinking, hand-eye Coordination, etc, etc

Are you, or your Doc, familiar with:

-- BUTRANS Patches (Transdermal System)

      (offers-generic offered)(Each patch - 1 week)

--Tegaderm Film  -Item # 1626W (4in x 4 3/4 in)

      (used to cover the Butrans Patch, so as to make   Waterproof - (Note inches & Item #))

--Cymbalta  Rx (generic offered)

A lot of MDs arent familiar with Butrans (incl esp for Fibro)  Tell them to get familiar! heh No magic, but help.

After 25 yrs with my MD Specialist for Fibro-CFIDS-O.I./Dysant...  he's currently retiring. OMG!  Im trying to be positive about replacement, but I dont have a lot of hope.  The MD that I've tried to get into for the last 13 yrs, claims knows FM/CFIDS, etc, wont take new patients, all that time. And I've done everything but set up a tent outside his office!  hmm.  That's an idea!!

I've found Senior Water Classes at the Y, help - ex, building up the body muscles trying to encourage muscles to work harder, to kick in, compensate for pain, immobility, lack of bone strength, more body stamina/stability somewhat helped me. Was better than nothing,, even the least little bit. 

 Heck, ppl with FM/CFIDS/OI tend to be Type A personalities.  We can use that for our stolen more mobility - ex Senior Water! heh

     Trouble is, starting out when in so much pain to begin with.

       The 1st day I went to the YMCA Class with my 68 yo neighbor, who was a Senior Water ClassTeacher, I thought, okayyy, No Sweat!  I've loved, LOVED pools, since a baby, was a virtual mermaid. I can do this!   I'll try. 

She's 68 and she teaches the Class!  Cant be too bad!

I took her class, went to the Lobby that day, to join, sign up, pay, they had to bring the paperwork to me, while i couldnt move from the Lobby chair.  Then they had to carry me out to the car.  No N/K!! And I think I did make it into my house alone, I think.

And I was immobile for at least a week, thereafter.  Keeping with it helps - 3x week, which I found I could - back then.  So perhaps some friend/hubby driver/Uber, or even Senior Svcs person/ride,  to go with you might be a good idea, to pour you into the car initially, after starting such classes.

   Then, COVID happened,

...   so I have to start alllll over again, from scratch, that's from joining 18 yrs ago!   Progress/regimen lost.  But I plan to give it my best shot!  I saw ppl arriving in Walkers, even ppl with no legs, for Senior Classes, even laps. Worth a try.

My FM MD Specialist pushed & pushed me to start the Senior Water Exercises.  But was worth it, for even a tiny bit of help, tiny bit mobility, tiny bit of stamina - hopefully.

   I even built up to laps, (altho tore a rotator cuff, which I thought impossible for swimming).

Cortisone shots helped too, (until that MD retired).

@Sassy7356    i hope you can find even the tiniest of relief, at least squeeze out at a minimum.  I realize we're even grateful for even the least little bit of help.

[Kachina624]

@JoyFilled Warrior.  Have you fibro sufferers tried the drug Lyrica, developed for fibro?  My doctor prescribed it for my pain but it made me very dizzy so I only took a couple.

[JoyFilled Warrior]

@Kachina624 

Lyrica sounds familiar, like I've taken it before.

YUP!

Yeah, @Kachina624  I have a bottle of Lyrica dated 2016, still filled with pills.  Lyrica sounded familiar but I dont remember why I was stopped from it. 

[I am still oxox]

Lyrica is serious stuff, I have been warned against it by a former MD

[Hopein24]

Wow. I feel for you. Most people don't realize how incredibly difficult it is to find a great Physician that knows a lot about fibromyalgia and how to treat it. I have 3 ruptured discs in my cervical spine from lugging and lifting during a 40 year nursing career, as well as 4 ruptured discs in my lumbar spine, fibromyalgia, osteoarthritis, psoriatic arthritis and rheumatoid arthritis. I have been disabled since 2014 and was "Totalled" finally, in 2018. I take pain medications 4 times daily and muscle relaxers 4 x daily. Everyday is a new pain in a new place. I might get up in the morning and my ankle might feel as if it is broken, then the next day, that is gone and it's my knee for that day. Unfortunately, we live in a very rural area and Physicians are few, let alone great ones. So I use my Tens unit for my back and neck pain, topicals like Biofreeze, try to stay as hydrated as possible, sleep on a wedge cushion if I can sleep in the bed. Usually sleep in the recliner about every night. Have been battling some pretty severe sciatica in the last 6 months. But I am optimistic! I look around and see other folks in a lot worse shape than me. I for one, welcome your thread, wish you all the best! 

[Kachina624]

@Hopein24   Usually rheumatologists treat fibro.  If I was looking for a doctor, that's where I'd start.

[owls]

I also suffer from fibromyalgia and several other conditions including scoliosis.

For several years I went to a rheumatalogist. I stopped because he did not believe in pain medications nor muscle relaxants for this condition. I have not seen anyone since then.

I am in constant pain somewhere in my body. It travels from day to day as someone else has mentioned.

To be particular about why I left the rheumatologist was when I told him about my scoliosis and he responded "I do not see any evidence of it" I just about blew my top. I wanted to tell him that I could get X-rays. Even the X-Ray tech could see the bulge in my back.

No medications at all.

Sorry for anyone who has fibro.

[CaliGold67]

Me Too.  Diagnosed first with Epstein Barr then Fibromyalgia in the 1990's.  They're both horrible and don't go away, although symptoms ebb and flow for no apparent reason.  I had to stop full time work.  But - I always looked healthy and could fake being fine.  I lived alone so nobody could notice how much time I had to spend resting and sleeping and eating easy foods.  Then I'd feel almost "well" and take a road trip, but spending the vacation on the bed and couch.  Weather very much affects my body.  Dry heat is the best thing.  Fibro also makes any recovery from flu, colds, injuries last 3X longer.  I'm unable to tolerate pharmaceuticals except for sleep meds and occasional pain meds.  I have NO answers or remedies or predictions about these "syndromes" and my doctors over the years are woefully inadequate except to be good listeners and order lab work.  I'm otherwise VERY healthy which is a result of genetics and careful habits (no alcohol , no smoking, 1 cup organic coffee in the morning, no eggs, gluten, sugar, red meat or beans).  Works for me.  I'm convinced that I'm able to minimize symptoms but then I'll have a BAD spell of all over body aches for days for seemingly no reason.  Beats the snot out of me - I've stopped trying to plan or blame or whine.  It just IS.  

[Epicurean]

Hi ladies,glad to find this thread. I've hade fibro so long I can't tell you how long it's been. I see a anesthesiologist/pain management physician. He has helped me so much. I have fibro,degenerative disc disease,had surgery for the at Johns Hopkins,and now have scoliosis. I'm on some pain meds,muscle relaxers,lidocaine patches,and lyrica,which makes me way to sleepy,but feel so much better when I take. Hopefully my Dr. can adjust the strength. I'm 79 so I don't have to worry about "taking care of a family",and my hubby is sooo understanding! 
Hope this thread continues,sometimes it's helpful just to complain to someone who understands! Hope you all have a good weekend💓

[catter70]

I hope all of you find something to help with your pain. It's a terrible thing to suffer day in and day out.