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FIBROMYALGIA & A COLOSTOMY...ANYONE ELSE?

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Gus
Sun Dec 27, 2009 2:08 am
                                 
J.Maree wrote:
  Do like the way your mind works young Hannah and Steve   for that matter!!!
Hehehehehehehehehehe!!! LOL!!!  total crackup the pair of yas be!!!


you know how my mind works???  Quick tell me  so i can work it all out.
Gus
Sun Dec 27, 2009 2:08 am
                                 
Txgirl wrote:
OBVIOUSLY STEVE HAS THE SAME PROBLEM WITH MORNING STIFFNESS THAT I DO


Oh Hannah you are evil
Sun Dec 27, 2009 2:30 am
I was on those too I feel bad for you that is some miserable stuff
Sun Dec 27, 2009 2:38 am
I notice if I take the Lyrica a few days in a row, as instructed, my lower legs swell...??? Have you had that happen?
Sun Dec 27, 2009 2:47 am
I didn't notice any swelling,
Sun Dec 27, 2009 8:34 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


Hi there...Well I guess your list of F.M. symptoms fits my list. I was diagnosed in 1999..I'm on less chemical meds now and finding an alkaline diet helpful as I was found to have a really acidic body.

Still... we try hard to keep our sense of humour (though tis' hard at times.)

Hope 2010 is a better year for everyone!

....Butterfly.
Mon Dec 28, 2009 7:38 am
                                 
Txgirl wrote:
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.


I sorta missed this one first time around - I too had a herniated disc in my neck, (walking around with a hernia throwing me out of kilter did that one) when it 'went' it felt like someone had ripped the muscle in my shoulder blade in half, but the pain it created was down my left arm, and I have never felt such excrutiating pain, much different to the chronic pain I have every day .... took all sorts of analgesia/gabapentin/diazepam etc. but the only relief I had was eventually through surgery to get that disc removed - I now have some sort of cage in there - it was immediate relief, wonderful! Took a little while to get the mobility back in my neck and it is now only about 80% but that could also be due to all the other crap that is going on .... fibro etc.

Hugs xxx
Mon Dec 28, 2009 2:42 pm
yeah, i have a lot of pain daily but when it goes, "out" omg, it's horrible, i know what u mean rachel.
I see a nuerologist and he is the one who has almost diagnosed me with fibro and he deals with my broken back and neck disc issues....so i always think my numbness and tingling inmy arms is from the neck. He said it is too....my leg and hip problems are from fibro he says...so basically my whole damn body hurts.
People dont understand and I feel like theres always something wrong with me. Its hard to not feel like a hypochondriach , yano?
I guess i should admit this.....about 13 yrs ago my ex and I got stationed in California. Our landlady was a very heavy woman, about 400 pounds, she was very sweet and I liked her a lot but she was the laziest person i have ever seen. She used to tell me, the more she sat around, the better, because her husband could just do everything. It was so bizarre, how she behaved. Anyway, she was on disability for fibromyalgia. To this day, that is how I worry people will see me if I say I have it!!!! I know it's irrational but why I think this way, I don't know. I dont look at others who have it in the same way I think people would look at me...so what gives???? I'm so weird. Good thing I'm going to see a shrink.
Mon Dec 28, 2009 4:59 pm
Hannah, the way you are thinking isn't irrational.  

Unfortunately Fibro has that 'idleness' label - it isn't something that can be officially diagnosed as there ain't a test for it. It is also something that can't be seen - I ride about my village on a scooter, (affectionately known as Harley!), it is the only way I can manage to walk my dogs, go shopping etc. However, I don't look disabled so to those that do not know me, it looks as though I am being lazy, as I'm a pretty heavy woman too! Less mobility = less likely to be able to do much about it, an ongoing cycle of problems. There are days when I feel not so bad, so I do too much, and there are days when I can barely do anything, feel so dizzy and sick or can't stay awake...

You cannot see fibro, diabetes, pernicious anaemia, sleep apnoea, a stoma, a hernia (although mine is pretty obvious, in winter with coats on etc it isn't!), backache, depression etc. etc...



So, either both of us are mad, ( 'cos I think sort of the same way too about telling others about it), or neither of us are mad - what's the name of your shrink?

Rachel xx
Mon Dec 28, 2009 7:46 pm
                                 
Txgirl wrote:
I notice if I take the Lyrica a few days in a row, as instructed, my lower legs swell...??? Have you had that happen?



Lyrica made me bloat like a freakin' toad!!!!  ...one of the reasons I said "nuff' O - this!!"
Mon Dec 28, 2009 7:49 pm
                                 
Butterfly wrote:
                                 
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


Hi there...Well I guess your list of F.M. symptoms fits my list. I was diagnosed in 1999..I'm on less chemical meds now and finding an alkaline diet helpful as I was found to have a really acidic body.

Still... we try hard to keep our sense of humour (though tis' hard at times.)

Hope 2010 is a better year for everyone!

....Butterfly.





Hi sweet Butterfly! Smile   I think I need to make more changes in my diet that might be helpful as well.........I also hope the New Year will bring happiness and better health to us all!! Smile  Hugs!
Mon Dec 28, 2009 8:12 pm
Hiya Butterfly!  What kind of diet is that you're on? What does it consist of?

~~Hannah~~
Gus
Mon Dec 28, 2009 8:50 pm
No Cashews! LMAO
Mon Dec 28, 2009 9:09 pm
...omg!! that's what I am eating now..(again)..lmao good call steve
Gus
Mon Dec 28, 2009 9:51 pm
                                 
Txgirl wrote:
...omg!! that's what I am eating now..(again)..lmao good call steve


I'm getting to know you Hannah lmao
Tue Dec 29, 2009 10:08 pm
I'll try to make this short, now I think its funny, but at the time, not so. After I was released from the Hospital diagnosed with Fibro, I have to travel 150 miles to get home and as I walked in the door I have a call from the Rehab Center and they want me there the next morning, I said I would be there in three days, man was this lady getting pissed at me but finally agreed. So, now I'm at the Rehab and they have an Olympic sized swimming pool and the water at 90 degrees. They had me doing exercises and they had a set of parallel bars about eight inches underwater, you sat on one bar and hooked your feet under the other bar and did sit ups. I was told to do ten sit ups so I told the therapist I could do 100 easily, she said TEN and she meant it so I followed instructions. A few days later she said I could do 25. So everything is going OK. The next day she said I could try fifty, hey no problem. The next morning as I got out of bed WHAMOO, Disc out, I'm almost passing out with the pain but be damned if I wasn't going to make it back to that hospital. By the time I was in my bathing trunks and made it to the pool entrance there were three therapists on me like shit on a blanket. They put me in an inner tube and in the deep end I just hung in there in the water for 30 min then two of them took hold of me and put me in the physio room, now I have five people all over me doing tests using tubes of hot and cold water, I thought they were pulling a fast one on me because I could feel the cold on but not the hot, as they were finished I asked about the hot one and she put it on my thigh, god damn but it was hot. So now they are having a private conversation, behind a curtain, and its the first time I had ever heard language like that coming from a physiotherapist, let alone three more of them, one guy said Fibromyalgia my F&^%&* ass, he's got a herniated disc, where the F&*^ is his doctor, another voice says he's on vacation and they can't locate his replacement. Then the guy doing the most cursing asked what locker my clothes were in, I told him and he came back and they helped me get dressed, that's when a couple of joints fell out of my shirt pocket and the guy says I hope you got more of that, you're going to need them tonight, next they get a wheelchair and helped me in the shuttle to my hotel. Next day I just stayed in bed, couple of more joints and the next day I was back but no more situps although I'm sure it would have helped, so now you can see what I think of Fibromyalgia. Ed.
Wed Dec 30, 2009 5:57 am
one guy said Fibromyalgia my F&^%&* ass, he's got a herniated disc, where the F&*^ is his doctor, another voice says he's on vacation and they can't locate his replacement. Then the guy doing the most cursing asked what locker my clothes were in, I told him and he came back and they helped me get dressed, that's when a couple of joints fell out of my shirt pocket and the guy says I hope you got more of that, you're going to need them tonight, next they get a wheelchair and helped me in the shuttle to my hotel. Next day I just stayed in bed, couple of more joints and the next day I was back but no more situps although I'm sure it would have helped, so now you can see what I think of Fibromyalgia. Ed.[/quote]

Having got the one and had the other - there is a vast difference between the two! The herniated disc was acute and excrutiatingly painful, but once sorted was gone; the fibro pain is chronic and miserable and grinds you down. Both I could do without! xx
Thu Dec 31, 2009 9:46 pm
If we can get back to the Fibro for a moment when I was diagnosed with it (1986) they used a chart and I believe there were 25 points in the muscle areas of which I had 22, when prodded would produce a dull pain but not something I would complain about, I was in that damn hospital because of a herniated disc, but at the time It wasn't acting up and that was a pity because it caused me some unnecessary suffering and then there was a stigma that seemed to go along with that diagnosis. I rarely told anyone about having it.
Even though I was so stiff and sore in my joints, after a few hours work the joint pain went away, my lumbar spine was in unbelievable pain and it wasn't until 1994 when I finally had a CAT scan that showed the bulging disc, not that I was going near a surgeon again, but it helped my sanity, still with so many maladys I still don't know what the hell is wrong now.
SO, HAPPY NEW YEAR. Ed
Fri Jan 01, 2010 7:26 pm
I was diagnosed in 1990 with the Fibro and have "managed" it fairly well till this past year when diagnosed with Colorectal Cancer.  I had surgery in March and have a permanent colosotmy.  With going through the chemo it stressed the Fibro out so had to deal with the pain and chronic fatigue from it as well as fatigue from chemo.  Just going to bathroom wore me out.   Chemo treatments were done in Sept., and am in post recovery. I have peripheral neuropathy from the chemo now and sometimes I think it is so painful because from the fibro.   I was put on Lyrica mid-december and have noticed weight gain, swollen hands and feet and a feeling of "being high".  I weaned myself off the Lyrica because I didn't like the side effects.  Am hoping to go to a naturopath for some help in dealing with both the fibro, and neuropathy.  I am supposed to return to work end of January but with don't think will be able to because of the pain and the numbness.   I try not to get down with dealing with all including the colostomy.   A triple whammy.
Sat Jan 02, 2010 9:44 am
Hiya everyone, have been very interested in this fybro/colostomy thread, as I am trying to work out what is wrong with me.
A saga of health issues, some of which seemed unrelated prior to reading this.
briefly, I have both  stomas and they are permanent and un-reversible due to cancer, I had a total pelvic exenteration, two years later I was diagnosed with diabetes which two years down the line is now well controlled, However the aches and pains in my major joints and surrounding muscles continues and is not getting any easier. Prior to cancer I had wiplash where they discovered the top of the spine is curved more than it should be and two years ago I was in a car crash that left me with a frozen shoulder, but it initially cleared with physio.
I had a blood test for 'polymyalga' but it did not show the necessary indicators, I have confirmed extensive arthritus in both knees from x-rays.
Some of symptons from lottagelady's post apply to me and have previously been attributed to other problems I have-many to diabetes, however now that is under control I am rethinking this.
I notice that some of the fybro drugs cause side effects, and am worried because of other drugs I take.
I have a rheumatology appointment on 15th Feb, I have had regular cancer check ups and scans and fingers crossed all is ok there, so I am really hoping that someone will take responsibility in helping me with my major joint issues rather than pass the buck to another medical team.
As far as my joints go I feel as though my body is under attack, I am fed up with painful sleepless nights, being exhausted from an average days activities and loosing the next couple of days. I just want to feel better than I do now.
Any comments or insight greatly appreciated.
Sat Jan 02, 2010 10:01 am
Hi, not a full member so can't message you, but I can reply with some contact info if you message me. Rachel x
Sat Jan 02, 2010 10:22 am
me neither lol! and cant post other contact info either!
juliaoboyle All Together An Odd Lineup Due Of-course To Cancer Or My-hereditry-make-up!
Sat Jan 09, 2010 2:06 am
WOW, I WAS THINKING I WAS TO ONLY ONE WITH THESE SYMTOMS INTERESTING.  SP
Sat Jan 09, 2010 4:26 am
Hi SP, I notice this is your first post and would like to welcome you to our zany world of ostimates, we try to help each other in any way we can, its not bad enough with the ostomy but when you throw in Fibro/chronic fatigue it makes life miserable because its hard to tell where one begins and others end. I hope you will feel free to ask anything, at least you will find a sympathetic ear and maybe some answers. Well 4:24 am time to try for some sleep again, Ed
Mon Jan 11, 2010 7:39 pm
I have been diagnosed as having Fibro. I also have a nerve disorder on the left side of my face that causes constant pain. The Lyrica helps a little for the facial pain. It has made a big difference in my Fibro pain. I could hardly put my hands over my head before or behind my back. I am still sore, but do not hurt anywhere as near as I used to.
I also do not get much sleep. Have many of the other symptoms you have mentioned.

I haven't been to this site in awhile. It's nice to see it busy.

Dawn
Sat Jan 23, 2010 7:17 pm
hey yall your so right the pains in my back and lower legs are the worst as far as the sweats i thought it was menapause the short memory the lost words dizzy staggering very dry skin- rashes i thought i was losing my mind im on lyrica do you so tired out that i could juust fall flat and not move
have any of you experience weepiness and the shakes im like that all the time i just dont have the energy anymore , normally im very energetic person but now i dont have it in me ant suggestions
Sat Jan 23, 2010 11:30 pm
I also was diagnosed with fibro after an ieo-anal anistimosis and total colectomy that failed.  I kept having infections in the internal pouch, thus getting fevers and dehydration and hospitalizations.  I had to have a permenent ielostomy put up, and about 5 revisions because of blockages. Anyhow, when I had my colon in, they said the pain was fibroarthritis. When the colon was out, and I was supposedly cured, it had to be fibromyalgia, from all the stress,etc. Went to a week long class at a well known clinic.  Used bio-feed back, needless to say, I gave them their bio-feed-back!  So, now I have chronic pain,and or fibro and they put me on lyrica. The lyrica does help the neropathy in my feet, but not the muscle pain.
Sun Jan 24, 2010 2:29 am
                                 
miyzy wrote:
hey yall your so right the pains in my back and lower legs are the worst as far as the sweats i thought it was menapause the short memory the lost words dizzy staggering very dry skin- rashes i thought i was losing my mind im on lyrica do you so tired out that i could juust fall flat and not move
have any of you experience weepiness and the shakes im like that all the time i just dont have the energy anymore , normally im very energetic person but now i dont have it in me ant suggestions


Miyzy, I get that a lot of the time - but depression and anxiety comes with the fibro too. Some days I can cry at the most simplest thing, usually things like not being able to do something I could easily do before all the crap started happening to me. The sweats too were put down to menapuse and I am on HRT for that, but can still be sat in my chair doing nothing with the sweat running down my face and looking as though I had just showered....previously, if nothing else looked okay, my hair did, but not now - yuk! As for dry skin, my hands have gone all warty and cracked in the last 12 months, (good enough to turn on a toad!) sometimes every line on my hand is open and like a paper cut - very sore, especially when it is cold.

It does feel as though you are losing your mind as all these silly little symptoms are in themselves a nuisance, but when you are having all of them, it is much more than that ... At the moment the thing that is bothering me is that I have the most disgusting taste in my mouth! Had it 3 days now and it tastes as though something has crawled in and died! It is overpowering everything I eat and drink - my teeth seem fine as does my mouth apart from this yukky taste, but I am also getting weird sensations in my upper jaw, as though my teeth are tingling somehow.... hard to describe! Anyone else had that one? Rachel xx
Sun Jan 24, 2010 1:19 pm
i wonder if it isn't a side effect of meds Rachel?
I would call ur doc and ask, maybe.
Sometimes it can take a while to develope side effects, even after being on a medication for years.
Sun Jan 24, 2010 1:42 pm
Hi Hannah, I am off to see him tomorrow, so will keep you posted - have been on some fibro sites and on there it seems quite common .... just my luck eh? xxxx
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