Fibromyalgia and abdominal pain - anyone else have this?
Posted , 19 users are following.
Hi all,
I wrote in the abdominal forum too. But I'm thinking some fibro buddies might give some insight.
I've had extreme exhaustion on and off all my life. Was diagnosed with PCOS, then Hashimotos, then Graves Disease and now most recently told that it was probably none of those things and is likely Lupus or Fibromyalgia.
In Feb I had campylobacter and landed in hospital for 5 days. I have experienced chronic pain all over my body since then. GP decided it was either lupus (liver issues involving surgery where part of my liver and part of my stomach was removed due to extreme infection - very small part of my stomach, quite a bit of my liver and my liver is thankfully fully grown again and normal. Had no issue with my stomach until Feb). Ever since then, I have what is considered chronic constipation (I can go 8-14 days without going to the bathroom!) but I've also had extreme exhaustion, hair loss, agonising pain in my shoulders, neck and hips and morning stiffness in my knees and fingers. I also have numbness/pins and needles at least once a day in my fingers or feet. I have chronic dizzy spells where I think I'm going to faint. Paracetamol does not help at all. Neither does Ibruprofen. Codeine & Ibruprofen mix tended to help a bit with the shoulder and hip pain but not much.
GP sent me to a rhuematologist in early August. He did a range of tests and said "none of the results point to any particular disease, you have markers for a number of diseases" and is continuing to do more blood tests. In August, he said it was likely a mix-message issue with my CNS, then earlier this month said it was fibromyalgia, then the next week said he never said it was fibromyalgia (he had even written it in my GP's report so we KNOW he said it was)
Anyway, two weeks ago I started getting extreme pain (like the campylobacter pain I had in Feb) in my upper left quadrant of my abdomen (doctor said likely small bowel), and landed in the emergency room and then hospital for 4 days. CT scan did not show anything wrong. Bloods all normal. Temp occasionally low-grade fever but mostly normal. Slightly low blood pressure but nothing to worry about. Eventually got sent home with oxycontin and told to come back to see gastroenterologist if it got worse.
It got worse. Gastroscopy has been done (last Wednesday) but I don't get the results until October 13 (surely they would have told me if it was bad right?!) Told to see my rhuematologist.
Rhuematologist (who by the way I think is hopeless, he doesn't listen and won't help me!) told me that fibromyalgia NEVER affects the abdomen. He told me I just need to see my gastroenterologist and make him sort that out as it's totally separate to what's going on with my pain (which by the way he refuses to treat - I am on 5mg endep for sleep but he said take paracetamol for pain - um why?! It does NOTHING!)
Pain has now moved to my lower right quadrant (above my pelvis diagnal to my belly button) as well as the upper right quadrant.
Has anyone experienced this with Fibromyalgia?! Or do I have something on top of the fibromyalgia I now have to worry about?!?!
1 like, 35 replies
amy08241 stsarah
Posted
My husband has never been diagnosed with fibromyalgia but he has some of the same symptoms as you and was told he had a rare disease called mesenteric panniculitis which causes inflammation in his colon and small intestine. They said they don't know whats causing this so can't treat it. Do you have fibromyalgia?
donna45273 amy08241
Posted
Hi my name is Donna I was diagnosed with ostero arthritis over 10 yrs ago then developed siactica down my right bum cheek right down my leg I've been up and down with the pain I has tajeb me 10yrs to get a diagnosed then org pain started in different parts of my body so i kept on telling my doctor but each time it was a different parts of my body day in day out then i started forgetting things ive been depressed over 30 years but managed it myself but all in all now I've been diagnosed with fibromyalgia straight away my first time at pain clinic I'm in so much pain day in day out in fed up with life to be fair then i sit and cry thinking im so selfish by i cannot carry on with all this going on in my body then they found 2 lumps in my liver which are benign and i now lock myself away in my bedroom I easier than trying to exlain to DWP I cannot walke far or do things i could do before so now I I stay home x
vanessa00700 stsarah
Posted
I had been experiencing abdominal pain as well and finally I got the answers that actually helped me with these pains. I have been diagnosed with fibromyalgia since February 20th of 2016 but had been suffering from it since 2011 it just took them 5yrs to finally get to the bottom of my chronic pain. As well the constant feeling of exhaustion has now been diagnosed as chronic fatigue syndrome and now that I know that I have been able to control it by forcing my body onto a proper sleeping schedule but it does take sometime for your body to get used to the schedule and I also take vitamin C, D and B12 which helps alot as most people with fibromyalgia need lots of vitamin D I also use the tanning beds in the winter. Now as far as the pain in the upper part of my abdominal area it took the doctors both GP and different specialist over a year to finally get the right diagnoses...it seems it was just as simple as my bowels being backed up so far that I was literally full of sh*t hahahaha...I just got my diagnoses on February 22nd 2017 and I started my treatment of 1 tablespoon of Lax a day per day and low and behold I started to finally have proper bowel movements 2 days later and I now continue to do so and sometimes up to 3 times per day and my pains have subsided but I do know that I am still backed up but this is working for me and from the sounds of it you may have some simular issues as I have. Since I got Fibromyalgia which we believe was caused by kidney stones and severe kidney infection; I have had a hysterectomy which has helped me a great deal with the pain I was suffering but I still have both my ovaries. This bowel issue was caused from my pain medication as I am taking a narcotic pain medication...for my fibromyalgia we have found that Cymbalta 60mgs per day along with oxyneo slow release 100mgs twice per day helps control alot of my pain where I can actually function on a daily basis but I do have my really bad days and for those days I take 10mgs of Oxycodone but only when my pain flares up to the point where I feel like I should go to the hospital which I have learned from past experiences is that they will just put an IV in and give me pain medication and drug me up then send me home. After reading your post stsarah I strongly believe that you need to see a different rheumatoid specialist as they are the only doctor who can legally diagnose you with fibromyalgia plus I am going to suggest that you also go see a G.I. specialist as mine was a huge help and just to let you know changing your eating habits will also make a huge difference as well as walking...I know it's extremely difficult to try and become active when you are in so much pain but it does work and to top everything off you need to be referred to a pain clinic as they have a great deal of help to offer to get rid of the pain without having to use narcotics...I am still on a waiting list for a pain clinic so the sooner the better is all I have to say. I hope something I have said has helped you and you can find some relief.
From one fibromyalgia suffer to another
philip2802phili stsarah
Posted
Stsarah I have fibromyalgia a nd can concur have had the same abdominal pains and severe constipation . I take pregabalin and amitryptaline which help with abdominal pains but still get constipation and to revert over the counter Meds d for my constipation. I think you may have fibromyalgia as I suffer with the neck and shoulder pains, numbness in my toes and fingers and now heel pain as well. I would be lost without my Medstead and they make life a lot better and manage to a degree the pain.Fibro sufferers tend to have a high resistance to pain than people who don't suffer fibromyalgia. I hope this helps good luck . Philip2802philip
cathy5958 stsarah
Posted
Yes I have this also have to use a probotic so I can use bathroom properly, lately all the stomach pain and flu like problems are becoming a big problem for me.. for some of the pain magneiseam is great help 400 mg a day, nothing fixes the issue but helps. Doc has talked about taking some of my colon out but I don't want it done.. the best of health to you, hope something I said helps..