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FIBROMYALGIA & A COLOSTOMY...ANYONE ELSE?

Posted by Txgirl, on Fri Dec 25, 2009 4:02 am
I was "diagnosed" with Fibromyalgia several months ago. I just now began taking the medication, because frankly, I don't have the "tender points" and my muscles don't give me problems; my large joints do. So I am not sure if that's what I have.
My neurologist put me on Lyrica. I haven't decided if I like it or not or if I will continue it.
Does anyone else out there have this same issue or have you been diagnosed?
Reply by WOUNDED DOE, on Fri Dec 25, 2009 4:39 am
Hi sweetie....hey, I'm reallly sorry to hear you have fibro.....I was diagnosed with that a few years back as well, mine is documented as "severe" by two of my doctors....geez, 'I' could have told them that! lol    Seriously, it is Hell.  The pain is soooo bad many times it's nearly debilitating.  They tried a number of meds over the years, all of which I had bad reactions to.  Lyrica was the last one they tried and it was not working for me and I didn't like the side effects I was dealing with.  .... THOUGH I know others on that medication who ALL gained weight from it but do quite well!!!   I am currently on no meds for it at all.....OR for my Crohn's for that matter.  Have been trying alternative natural things but it is not easy....but I refuse to let my pain stop me from doing most of the things I like to do.  Living with that horrible muscle pain from head to toe can be quite the challenge, and they are not minor aches and pains.  Write me privately if you want, we'll talk Smile  Good luck with the Lyrica, like I said, I do know others taking that med, and also Amitriptyline, and both work pretty good for most people.  Give it time, hopefully it will help you as well. Smile
Reply by lottagelady, on Fri Dec 25, 2009 4:48 am
Yes - me too, suspect it is as a result of all the stress of being unwell/surgery etc etc. I am taking imipramine, but doesn't do much really, feel less like I've been run over by a bus in the mornings but sometimes the pain in my back is horrendous - but is it the fibromyalgia or is it the hernia/stoma? Who knows.....symptoms  blur into one! Merry Christmas all x
Reply by WOUNDED DOE, on Fri Dec 25, 2009 4:57 am
                                 
lottagelady wrote:
Yes - me too, suspect it is as a result of all the stress of being unwell/surgery etc etc. I am taking imipramine, but doesn't do much really, feel less like I've been run over by a bus in the mornings but sometimes the pain in my back is horrendous - but is it the fibromyalgia or is it the hernia/stoma? Who knows.....symptoms  blur into one! Merry Christmas all x



Ah, my mother and one of my girlfriends are on imipramine and they say the same thing, that it doesn't seem to do much for them at all.  Hmm.     ...and wow, I wonder just how many of our osto family members on this site suffer from the fibro end of things, our bodies having gone through traumas...one of the main possible reasons they believe spurs fibro into action to begin with, though they are not certain.    Funny thing, the meds were also expected to help my crazy sleep disorder ...this insomnia has been a demon for a long time but the meds never helped me with that at all.   Tonight is my second night without sleep again....do you girls or any one else experience worse fibro pain during longer patterns of insomnia??
Gus
Reply by Gus, on Fri Dec 25, 2009 6:03 am
So i have a question,, my shoulders really throb and ache badly at night,, is this a sign?
Reply by lottagelady, on Fri Dec 25, 2009 6:40 am
Doe - strangely, sometimes I almost feel better if I have had less sleep, though I am physically exhausted I seem to function slightly better mentally - but if its more than 1 night I've lost then I am doomed! Also having said imipramine is not very effective, it is much worse without it, I tried and I was in pain more and not sleeping at all... they then tried me on mirtazepine and trazadone and was sedated for a week, cannot be doing with that!
Other symptoms I have and would be interested to know if you had?
recurrent thrush very dry cracked skin on hands dry eyes dizziness nausea sweats - I can just be sitting in a chair and the sweat rolls off my head as though I had just got out of the shower! clumsiness, always walking into things disorientation unable to finish sentences short term memory loss easily panicked if things go wrong headaches esp in the morning funny lumps/blemishes/crusty things on my skin hair falling out twitchy muscles numbness in limbs/pins and needlesMerry Christmas! xx
Reply by WOUNDED DOE, on Fri Dec 25, 2009 8:10 am
                                 
Gus wrote:
So i have a question,, my shoulders really throb and ache badly at night,, is this a sign?



Maybe it's because you're such a good friend to people, it is the weight of the world resting on your shoulders that you feel...................  Smile
Gus
Reply by Gus, on Fri Dec 25, 2009 8:24 am
Nah,, you good people aren't a burden on my shoulders,, you make life worth living,, all of you,, xoxo
Reply by WOUNDED DOE, on Fri Dec 25, 2009 8:25 am
                                 
lottagelady wrote:
Doe - strangely, sometimes I almost feel better if I have had less sleep, though I am physically exhausted I seem to function slightly better mentally - but if its more than 1 night I've lost then I am doomed! Also having said imipramine is not very effective, it is much worse without it, I tried and I was in pain more and not sleeping at all... they then tried me on mirtazepine and trazadone and was sedated for a week, cannot be doing with that!
Other symptoms I have and would be interested to know if you had?
recurrent thrush very dry cracked skin on hands dry eyes dizziness nausea sweats - I can just be sitting in a chair and the sweat rolls off my head as though I had just got out of the shower! clumsiness, always walking into things disorientation unable to finish sentences short term memory loss easily panicked if things go wrong headaches esp in the morning funny lumps/blemishes/crusty things on my skin hair falling out twitchy muscles numbness in limbs/pins and needles

Merry Christmas! xx




Hey sweet sis...cool of you to list the other symptoms, I found to be very interesting....

As for the above symptoms that I share with you, with my out-of-control sleep disorder I end up having some clumsiness and being tipsy and dizzy....I do have occasional panic episodes, though I can't believe I'm admitting that, and I do experience the numbness and the pins and needles feelings.....in fact, one of my Doctors was trying to locate and pinpoint the reason for the numbness probs by using some sort of method of using little electrical stimulus in different various points on my body..............however............this crazy feisty little Doe of y'alls  couldn't tolerate the procedure.  Doesn't matter that they dimmed the lights and gave me the sounds of the ocean to listen to.   They had all these little stickers on me everywhere with electode thingys and while they were gradually increasing the strength of the shocks to test my nerves here and there and everywhere, I finally decided the situation just wasn't my cup of tea so I sat straight up on the gurney and piped up "WE'RE DONE!" and started ripping wires and tape off myself.  I was OUTA THERE!

No more shocks.

Nope.

Not for this little chick.

No way.

All done.
Reply by gutenberg, on Fri Dec 25, 2009 1:16 pm
OK let me jump in here for a minute, in 1987 I was diagnosed with fibromyalgia and thought it was a crock because I had a herniated disc which caused me considerable discomfort, so much so that even if I did have it I wouldn't know because of other spinal problems. Last year I finally decided to go to the local pain clinic. First of I had to be assessed by a psychologist and then to a psychiatrist who laughed at the mention of fibromyalgia, said I would never know if I had it or not, then she looked at my medication sheet and I thought she was going ape shit on me, like what are you taking all these drugs for and I informed her I didn't write out the prescriptions, in any event she picked up the phone and called the pharmacy and proceeded to change my medications and I'm thinking hell she's going over my doctors head, but she was adamant so changes I got, then we got down to my problems of having to accept the surgeon who screwed up my aneurysm operation and in the process killed my colon. The first thing she said "did you sue the man", of course I didn't but this woman really helped me so much I said the hell with the pain clinic. With the new medications I started putting on weight, which was scaring the hell out of me as I had dropped down to 119 pounds and within a couple of months I got up to 140 and things were looking up until something happened to my spine about 20 months ago, made a herniated disc feel like a scratch in comparison. She did tell me that all the trauma my body had gone through would be a cause for fibromyalgia but I'll never know it, but somebody in relatively good health it would turn their world upside down. And that's my story. Ed

BY the way Rachel I do have some of the symptoms you described so well, but I chalk it up to my spinal problems and It's hard to separate one from the other.
Reply by gutenberg, on Fri Dec 25, 2009 1:45 pm
WOUNDED DOE: Your story reminded me of my LAST visit to the pain clinic In one of the major hospitals in the city. The difference with me was they used acupuncture needles with the electrodes tied into a machine. When the doctor turned the machine on I started flopping like a fish out of water as somebody had forgotten to turn the dials off after the last patient, and he made a mad dash to turn the machine off, I said, (and I paraphrase here) gee willikers that smarts and I no longer want this treatment, believe that if you wish.
What I really said would be deleted, but I'm sure you get the picture.
zap,zap, zap,zap, zap, zap, zap, ZZZAAAAPPPPP WTF
Reply by lottagelady, on Fri Dec 25, 2009 2:39 pm
                                 
Gus wrote:
So i have a question,, my shoulders really throb and ache badly at night,, is this a sign?


Nah, that's just the missus getting her own back whilst you are asleep!
Reply by lottagelady, on Fri Dec 25, 2009 2:44 pm
BY the way Rachel I do have some of the symptoms you described so well, but I chalk it up to my spinal problems and It's hard to separate one from the other.[/quote]

I think that's the problem - a lot of us have so many different 'syndromes'/illnesses or whatever brought upon us by 'whatever' that half the time you cannot tell which symptom belongs to which ...........
Reply by Txgirl, on Fri Dec 25, 2009 2:49 pm
                                 
lottagelady wrote:
Doe - strangely, sometimes I almost feel better if I have had less sleep, though I am physically exhausted I seem to function slightly better mentally - but if its more than 1 night I've lost then I am doomed! Also having said imipramine is not very effective, it is much worse without it, I tried and I was in pain more and not sleeping at all... they then tried me on mirtazepine and trazadone and was sedated for a week, cannot be doing with that!
Other symptoms I have and would be interested to know if you had?
recurrent thrush very dry cracked skin on hands dry eyes dizziness nausea sweats - I can just be sitting in a chair and the sweat rolls off my head as though I had just got out of the shower! clumsiness, always walking into things disorientation unable to finish sentences short term memory loss easily panicked if things go wrong headaches esp in the morning funny lumps/blemishes/crusty things on my skin hair falling out twitchy muscles numbness in limbs/pins and needles
Merry Christmas! xx



Every single thing you listed here, I have. I have a rash on my lower leg that now circles my whole lower leg. The tipping over, everything!! I'm shocked to see someone else has this stuff, I thought I was crazy!!!
Love & touches to all...lol...me
Reply by lottagelady, on Fri Dec 25, 2009 3:20 pm
Every single thing you listed here, I have. I have a rash on my lower leg that now circles my whole lower leg. The tipping over, everything!! I'm shocked to see someone else has this stuff, I thought I was crazy!!!
Love & touches to all...lol...me[/quote]

Bit frightening isn't it? I was only diagnosed in July this year, but some of these things have been troubling me now for a few years - felt like a hypochondriac, but all these things are real, but when I saw a list of symptoms of fibro, 99% I have .... just waiting for the haemorroids and the nose bleeds, they haven't hit me yet! Hope everyone has/had or is having a nice Christmas! xx
Reply by WOUNDED DOE, on Fri Dec 25, 2009 6:29 pm
                                 
gutenberg wrote:
WOUNDED DOE: Your story reminded me of my LAST visit to the pain clinic In one of the major hospitals in the city. The difference with me was they used acupuncture needles with the electrodes tied into a machine. When the doctor turned the machine on I started flopping like a fish out of water as somebody had forgotten to turn the dials off after the last patient, and he made a mad dash to turn the machine off, I said, (and I paraphrase here) gee willikers that smarts and I no longer want this treatment, believe that if you wish.
What I really said would be deleted, but I'm sure you get the picture.
zap,zap, zap,zap, zap, zap, zap, ZZZAAAAPPPPP WTF




AH yes, when I was receiving acupuncture treatments for my sleep disorder. the needles she placed in my feet were hooked up to electrodes but I never felt anything that way.
Reply by Txgirl, on Sat Dec 26, 2009 12:32 am
my neurologist went from thinking I had MS and we still have a time figuring if a lot of my stuff is from the herniated disc in my neck and the 4 broken vertebra in my back or fibromyalgia.
I've been on Cymbalta ( doesnt work for me) Neurontin (nope) and other crap but nothing helps with this pain I have or the numbness and tingling. Lyrica doean't help as of yet...it does hwever make me retain water like a sponge.
Reply by gutenberg, on Sat Dec 26, 2009 1:35 pm
Yo GUS, regarding your shoulders, I don't know if that fits in with the Fibro/syndrome, but I have had that trouble for many a year, finally seen a specialist and he diagnosed a rotor cup all screwed up so I had surgery done and now i have one good shoulder to sleep on, but when I roll over in my sleep it sure can wake me in a hurry, now I get my doctor to give me a shot in the shoulder, takes about three weeks before I get any relief and by the fifth week I'm back where I started from and I don't want to go there again unless I really have to. One doctor told me it was from a lot of heavy lifting and should be expected, and I would imagine you did a lot of that as a Truckee, I'd get it looked into before you have to go down the surgical route. Don't know if that helps or not but good luck and have it looked after. Ed
Reply by Txgirl, on Sat Dec 26, 2009 1:55 pm
Ed, How was your holiday??
Gus
Reply by Gus, on Sat Dec 26, 2009 5:32 pm
Yanno Ed I was thinking the same thing,, cortisone shot into both shoulders. I had about 9 of them in my Rugby days due to constant dislocations in tackles,, didnt stop me playing but damn they hurt. Thanks Ed good to see you back mate
Reply by gutenberg, on Sat Dec 26, 2009 6:05 pm
Hi Hannah, nice of you to ask, but for the last couple of weeks I felt Like the inside of my pouch, and as for holidays mine start on Dec. 26 when all this crap is over, on the bright side I think the new year looks promising as I can concentrate on having some Long lasting maladies looked into now that I don't have to worry about leaking wafers anymore and as long as that lasts its going to be full steam ahead. Have a Happy Holiday, Scrooge, aka Ed.

By the way Hannah did you have any surgeries for your disc and vertebrae problems?. What I'm thinking is scar tissue which can be as bad as the original problems. Ed


Last edited by gutenberg on Sat Dec 26, 2009 6:25 pm; edited 1 time in total
Reply by gutenberg, on Sat Dec 26, 2009 6:20 pm
                                 
Gus wrote:
Yanno Ed I was thinking the same thing,, cortisone shot into both shoulders. I had about 9 of them in my Rugby days due to constant dislocations in tackles,, didnt stop me playing but damn they hurt. Thanks Ed good to see you back mate


Hi Gus, after reading your post I see there won't be any great surprises if you have to get more shots, the biggest problem is having both shoulders done at once, had that done once and then how the hell do you get to sleep unless you can sleep on your back, best wait until your Mrs is back up to par, by the way, how is she doing? Keep good care of her if you get both shoulders done at once. Right now I have to watch how I get dressed, gotta get the bad shoulder first when putting on a shirt, otherwise, a good deal of cursing and we know you wouldn't go there. Ed
Gotta go looking to find a joke.
Reply by Txgirl, on Sat Dec 26, 2009 9:08 pm
Sorry to hear things are not so great.
No, I never did have surgery for either one. They wanted to do surgery for the back but i just couldn't bring myself to do it. lol
I did have 5 shoulder surgeries for a torn rotator cuff amd I tore my deltoid off the bone.
Im too chicken for back surgery.
Reply by Mike, on Sat Dec 26, 2009 10:18 pm
                                 
lottagelady wrote:
Doe - strangely, sometimes I almost feel better if I have had less sleep, though I am physically exhausted I seem to function slightly better mentally - but if its more than 1 night I've lost then I am doomed! Also having said imipramine is not very effective, it is much worse without it, I tried and I was in pain more and not sleeping at all... they then tried me on mirtazepine and trazadone and was sedated for a week, cannot be doing with that!
Other symptoms I have and would be interested to know if you had?
recurrent thrush very dry cracked skin on hands dry eyes dizziness nausea sweats - I can just be sitting in a chair and the sweat rolls off my head as though I had just got out of the shower! clumsiness, always walking into things disorientation unable to finish sentences short term memory loss easily panicked if things go wrong headaches esp in the morning funny lumps/blemishes/crusty things on my skin hair falling out twitchy muscles numbness in limbs/pins and needlesMerry Christmas! xx
I had Fibro and Shingles last year I tell you thats some rough stuff I thouygh I would lose my mind.
Reply by Txgirl, on Sat Dec 26, 2009 10:29 pm
mike, there are times when I think I AM losing my mind and maybe thats why the doc thinks I may have it. lol
Reply by Mike, on Sat Dec 26, 2009 10:46 pm
IfYou or the dr think youy might have Fibro, ask your dr about Prendisone  Mine started me on it right away
Reply by Txgirl, on Sun Dec 27, 2009 12:02 am
He has me on Lyrica and I have been on Cymbalta, Nuerontin and eveything else you can imagine. He hasn't made a "firm" diagnosis but hell, who knows what it is. All I know is I hurt like hell in my hip joints and legs and I'm so damn astiff in the mornings I can hardly walk.
Gus
Reply by Gus, on Sun Dec 27, 2009 12:29 am
                                 
Txgirl wrote:
He has me on Lyrica and I have been on Cymbalta, Nuerontin and eveything else you can imagine. He hasn't made a "firm" diagnosis but hell, who knows what it is. All I know is I hurt like hell in my hip joints and legs and I'm so damn astiff in the mornings I can hardly walk.



bangs head on desk to make sure i behave lmao
Reply by Txgirl, on Sun Dec 27, 2009 1:17 am
OBVIOUSLY STEVE HAS THE SAME PROBLEM WITH MORNING STIFFNESS THAT I DO
Past Member
Reply by Past Member, on Sun Dec 27, 2009 2:04 am
  Do like the way your mind works young Hannah and Steve   for that matter!!!
Hehehehehehehehehehe!!! LOL!!!  total crackup the pair of yas be!!!
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