Fibromyalgia & Colostomy - Seeking Advice & Support for Joint Pain

You know how my mind works?  Quick, tell me  so I can work it all out.

Oh Hannah, you are evil.

I was on those too. I feel bad for you. That is some miserable stuff.

I notice if I take the Lyrica a few days in a row, as instructed, my lower legs swell...??? Have you had that happen?

I didn't notice any swelling,

Words of Encouragement from Ostomy Advocates I Hollister

Hi there... Well, I guess your list of FM symptoms fits my list. I was diagnosed in 1999. I'm on fewer 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 humor (though 'tis hard at times.)

Hope 2010 is a better year for everyone!

....Butterfly.

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 excruciating 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

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 neurologist 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 in my 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 don't understand and I feel like there's always something wrong with me. It's hard to not feel like a hypochondriac, 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 don't 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.

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 isn'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 anemia, sleep apnea, a stoma, a hernia (although mine is pretty obvious, in winter with coats on, etc. it isn't!), backache, depression, etc. etc...



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So, either both of us are mad, ('cause 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

Lyrica made me bloat like a freakin' toad!!!!    ...one of the reasons I said "nuff' O - this!!"

Hi there... Well, I guess your list of F.M. symptoms fits my list. I was diagnosed in 1999. I'm on fewer 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 humor (though 'tis hard at times.)

Hope 2010 is a better year for everyone!

....Butterfly.        

Hi sweet Butterfly!   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!!  Hugs!

Hiya Butterfly! What kind of diet is that you're on? What does it consist of?

~~Hannah~~

No cashews! LMAO

...OMG!! That's what I am eating now..(again)..LMAO good call Steve

I'm getting to know you, Hannah. LMAO

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.

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.

Having got the one and had the other - there is a vast difference between the two! The herniated disc was acute and excruciatingly painful, but once sorted was gone; the fibro pain is chronic and miserable and grinds you down. Both I could do without! xx

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

I was diagnosed in 1990 with fibromyalgia and have "managed" it fairly well until this past year when diagnosed with colorectal cancer. I had surgery in March and now have a permanent colostomy. Going through the chemo stressed the fibromyalgia out, so I had to deal with the pain and chronic fatigue from it, as well as fatigue from the chemo. Just going to the bathroom wore me out. The chemo treatments were done in September, and I am now in post-recovery. I have peripheral neuropathy from the chemo now, and sometimes I think it is so painful because of the fibromyalgia. I was put on Lyrica in 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. I am hoping to go to a naturopath for some help in dealing with both the fibromyalgia and neuropathy. I am supposed to return to work at the end of January, but I don't think I will be able to because of the pain and numbness. I try not to get down while dealing with all of this, including the colostomy. It's a triple whammy.

Hiya everyone, I have been very interested in this fibro/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 irreversible 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 continue and are not getting any easier. Prior to cancer, I had whiplash 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 'polymyalgia' but it did not show the necessary indicators. I have confirmed extensive arthritis in both knees from x-rays.
Some of the symptoms 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 fibro drugs cause side effects, and I 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 okay 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 day's activities, and losing the next couple of days. I just want to feel better than I do now.
Any comments or insight greatly appreciated.

Me neither lol! And can't post other contact info either!
Juliaoboyle all together an odd lineup due of course to cancer or my hereditary makeup!

Wow, I was thinking I was the only one with these symptoms. Interesting. Sp

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 near as much as I used to.
I also do not get much sleep. I have many of the other symptoms you have mentioned.

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

Dawn

Hey y'all, you're so right. The pains in my back and lower legs are the worst. As far as the sweats, I thought it was menopause. The short memory, the lost words, dizzy staggering, very dry skin, rashes - I thought I was losing my mind. I'm on Lyrica. Do any of you feel so tired that you could just fall flat and not move?
Have any of you experienced weepiness and the shakes? I'm like that all the time. I just don't have the energy anymore. Normally, I'm a very energetic person, but now I don't have it in me. Any suggestions?

I also was diagnosed with fibro after an ileo-anal anastomosis 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 permanent ileostomy 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 biofeedback, needless to say, I gave them their biofeedback! So, now I have chronic pain and/or fibro, and they put me on Lyrica. The Lyrica does help the neuropathy in my feet, but not the muscle pain.

Miyzy, I get that a lot of the time - but depression and anxiety come with the fibro too. Some days I can cry at the 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 menopause and I am on HRT for that, but can still be sitting 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! I've had it for 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 yucky 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

I wonder if it isn't a side effect of meds, Rachel?
I would call your doc and ask, maybe.
Sometimes it can take a while to develop side effects, even after being on a medication for years.

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