Fibromyalgia & Colostomy - Seeking Advice & Support for Joint Pain

The Lyrica does make me very tired. I had no idea that sweating was part of the fibro. Thanks for that information.

Hi Hannah - Apparently it is gastric reflux, more medication to take! I think this hernia needs doing sooner rather than later .......

Greetings Fellow Ostimates, seeing as most of this forum appears to be dealing with other than ostomys I thought I might jump in, especially after hearing some of the remarks concerning Fibro/Chronic Fatigue symptoms. For the past four days I've been getting this foul tasting (almost like copper) though I've never tasted copper but I'm sure some of you will understand, also for the last six months I've woke at night just covered with sweat and the sheets so wet they had to be changed. I thought I was coming down with pneumonia but the doc said it was from my spinal problems getting inflamed and taking a deep breath made it feel like that, man what a boost that was, so now we finally get to my new hernia. another boost, more like a kick in the ass. By this time I forgot what the hell I was going ask him about my stoma, oh well I have another appointment in four weeks and there will be something new to try to get a grasp on. Thanks to these forums I have learned more than I ever have from any medical entity. I guess I've babbled on enough for now, thanks for your patience. Ed
PS: has anyone ever heard of a hernia repairing itself, sans doctors?

For the past four days I've been getting this foul-tasting (almost like copper), though I've never tasted copper, but I'm sure some of you will understand. Also, for the last six months, I've woken up at night just covered with sweat and the sheets so wet they had to be changed.

Hi Ed - that's just what mine tasted like to begin with - it is now tasting fetid and rotten - the doc said it could be one of three things .... teeth, sinuses, or gastric reflux - and he has opted for the latter because of my recent history of indigestion, nausea, etc. - reckon it's all hernia-related, sorry about that!

As for the sweats - that's a symptom of the fibro too..... as is IBS, which is probably what I have, and I didn't have a bowel problem at all until this nonsense started!

Take care, Rachel xxxx

I am a certified wound, ostomy, continence nurse as well as a hospice nurse. I have a patient who is suffering from severe fibromyalgia. We have recently started the patient on a new fibromyalgia medicine called Savella. It starts out as a titration package of 30 days and then the dose can be adjusted upward to 100mg twice a day. It has done wonders for this patient where nothing else has been able to help. After finishing the titration package, the patient is now taking 75mg twice a day. I don't know if the patient will continue to get relief from this medication but currently it has added a tremendous amount of quality back to everyday life. The only side effect reported by this patient has been increased sleepiness for 1-3 days each time the dosage is increased. Patients must be very careful and monitored closely for severe adverse reactions when taken with some antidepressants.

I appreciate the response from those who took the time to list symptoms. I was surprised to see how many similar symptoms are in common with my patient. The most notable are the sleep disorder and anxiety/panic attacks, extremely dry skin.

The patient also takes 300mg of Lyrica, 50mcg of Fentanyl, Norco 5/325 as needed, Citalopram 20mg, Ativan 0.5mg as needed, and Trazodone 50mg.

The patient previously had been on 300mcg of Fentanyl, Oxycodone 6 times a day, Amitriptyline 100mg, and Celexa 20mg.

My thoughts and prayers are with you all. I hope this information can help another.

Words of Encouragement from Ostomy Advocates I Hollister

Rachel, I think you're right. Are you going to get it done soon?

Who knows - not heard a thing from the London hospital as yet and have deferred Oxford for 6 months to allow for that - so suspect will only get it done if an emergency, but don't need that either! Arrrrrrrgh...............
Rachel xxxxxxxxxxxxxx

txgirl,
Was looking for Cymbalta and ileostomy and there you were from last year. Rheumatologist (sp?) thinks Fibromyalgia, hip bursitis, psoriatic arthritis?? Took lots of blood and x-rays, go back in 2 weeks--said take Cymbalta? Well, after recent things in the news about Cymbalta?? I have not tried it yet. Did it help you? Are your hips still hurting? Is your ostomy from ulcerative colitis? Just wondering if all this stuff is tied together, having had UC for like 17 years before ostomy and all the medications taken back in the late 60s-70s causing joint etc. pain now? Or old age? Anyway, just wondering if Cymbalta helped? The cortisone injection in the hip did help for now. Any thoughts? Thanks
Sooziq

I see this is from awhile back but is a part of my life at this time - so it may also be an issue for others.

During the past 35 years, I have been diagnosed with arthritis, Lupus, MS, and all the things you mention in your various posts - plus Dercum's (adiposis dolorosa). I don't really care what it is called. But I sure would like some relief.

I haven't found any solutions. I am withdrawing from everything and anything - except thyroid (mine was removed when I was 17 - Hashimoto's). The Cymbalta withdrawal isn't fun. I was never addicted to the narcotics but won't take those either. Lyrica made me violently ill.

Pain is bad - very bad. Ostomy has been a non-issue for me (Aug 2010) so far - well pretty minor comparatively. So many things you shared were important to me. One thing especially stayed with me .... "you don't look sick". I am glad I don't appear to be ill but I am almost completely housebound / bedbound. Almost all activities trigger an acceleration of pain. I feel a bit guilty for looking well and I wonder if 'they' think I must be faking it.

Once again, it helps to know I am not alone. I didn't find any answers. I hope some of us share if we do discover anything that helps. Having all that ... PLUS - seems like overkill.

"Thoughts" - you all know I think too much.

Wouldn't it be strange to discover that fibromyalgia was both caused (or triggered), and treated by the same substances.

This is just a personal opinion / question. I have no data or research to back up my thoughts.

For me... I am beginning to think that my multiple-year treatment has kept me 'down', and out. I was on Cymbalta about a year before I had to go on disability and leave the job and home (and people) that was my joy in life.

Yes, fibromyalgia is one of the things I have. My son, 36, and hubby also have it, plus the colostomy... for me.

Thanks for continuing on this post about fibromyalgia. I have also had it for a very long time and was diagnosed FINALLY in 2010. I am 61 years old and had planned to work until 65. There is no way that I can make it that long. I have tried all of those medications and have been with a great pain management doctor since 2011. He monitors everything very closely. I have tried Lyrica, Cymbalta, and Savella and could not take any of those medications. Gabapentin is helping and pain medication. I tried to get off of everything a few years ago and did it for over six months. It seemed like the flare-ups became vicious. I had to go back on the pain meds. I wish more doctors and nurses (thanks for your post above dadobi) believed that fibromyalgia is really a disease. It is very frustrating going to a doctor who thinks I am crazy.

With regard to my colostomy, I had mine in September of 2013. I was so very fortunate to have it reversed in January of 2014, but I am still a follower on this website because if I can help someone, I want to be here for them, even if it is just one person. Thank you all for always being so honest and sharing your stories. You are all incredible.

Dianne

I was told I had it a few years ago by a rheumatologist and put on Lyrica. But I honestly didn't remember taking it until you mentioned it. I think a lot of my pain is related to hypermobility - I've had a shoulder reconstruction and knee surgery due to stupid injuries because of it. By stupid, I mean nothing big to write home about, just small things that shouldn't have caused the damage they did. One time they were trying me on a new migraine med but it caused a loss of feeling and I couldn't tell because I couldn't feel how bad the pain was, how far my wrist bent one day and sprained it. So, I discontinued that med immediately. I remember my eye doctor said they were experimenting with Lyrica and something for eyes now too. Sorry, I can't remember if it was helpful. I got off as many meds as I could because I felt like they were just saying fibro and not looking for the root cause of the pain. My inflammation markers went down a lot after my colon was removed. I have a referral for a pain specialist but I'm needing a break from doctors for a bit so I haven't followed up.