Fibromyalgia, possible MS, and unbearably bad bowel problems (TMI warning)

[BoldKitties]

Not sure where to put this so going with general health. This is embarassing, was going to name change but couldn't and am now desperate. I was diagnosed with fibromyalgia about 4 years ago, and despite having been tried on several medications (currently pregabalin and amitryptaline, previously others) I've been getting steadily worse. Recently been having tremors, numbness in hands and legs, and twitching. Also trouble swallowing (I choke even taking a drink of water) and loss of control of my bowels. So GP has referred me to rheumatology and neurology, mentioning possible MS. Recently got a letter saying that I'm on a wait list for an appointment.

The problem is that my bowel problems have gotten so, so bad lately. It happens from time to time. First time, after a month of hideous diarrhoea, I saw my GP, who at the time said it was nothing to worry about, everyone gets diarrhoea sometimes. The second time it was much worse. I was taking Buscopan, which mostly helped, but there was one day it was particularly bad, and at work, despite running to the toilets, I soiled myself. I was in training at the time. I had to phone the trainer from the bathroom and explain, then slink out of the building with my coat tied around my waist, hoping nobody would notice that I had shit all down my skinny jeans.

This time, it's been going on for three weeks. I can't go to work as can't venture too far from my toilet. This morning it was grotesque (total TMI here). I made it to the bathroom and then exploded. Literally had to bleach the whole bathroom, I was cleaning shit off the walls. Happened again tonight, and although not quite as bad, there was quite a bit of blood also.

Am getting a bit frightened now. If I go back to GP they'll probably say that it's okay, I just have to persevere and wait for my referral.

This isn't right, is it? I live in fear of feeling that now familiar twitching and squeezing in my lower abdomen. The blood has really terrified me. What do I do? Can anyone suggest anything to help control this? I've taken to eating and drinking very bland stuff. Water, bread, some soup. Anything else I can do?

Also get your vitamin b12/folate tested.

www.livestrong.com/article/464520-vitamin-b12-for-fibromyalgia/

www.nhs.uk/conditions/Anaemia-vitamin-B12-and-folate-deficiency/Pages/Introduction.aspx

And try modifying your diet

patient.info/health/irritable-bowel-syndrome-diet-sheet

Hope all this helps x

I've been advised to not take loperamide due to having had problems with huge piles in the past (they were whipped out a couple of years ago). But interesting as I am a long term user of gab ape tone, and I have other tedious side effects too.
I've also tried fodmap diet modifications and there so little left that I can eat, but even that has dramatically reduced recently (my arse is a mess)
for those of us who can (not me sadly, sniff)

Gabapentin, ffs

Thanks Bold - appreciated. Yeah, the dye wasn't as bad as I thought though - kind of a warm sensation akin to pissing myself, yes !! Lol !! I'm feeling quite apprehensive, even more so since I had the misfortune of being told quite graphically that they were testing for G.I cancer. I have the Moviprep for the night before, and the morning of, which I'm also apprehensive about. Bland food diet - check. Clear fluids - check. Sedation - absolutely, definitely CHECK !!! I can't wait until this week is over tbh. Although, in a funny sort of way, its nice to welcomed into the Shithead gang !!

I've just had my ct scan and can confirm the pissing sensation. Makes a nice change from the crapping sensation

Had endoscopy and various biopsies today, I've got an hiatus hernia which explains the acid and reflux problems. Only the colonoscopy to go
Really sore throat from swallowing the camera
If you've had a colonoscopy which pain management did you go for? I've been offered choice of nothing/has and air/sedation with painkiller

I've got them both tomorrow wage - intending to be sedated by whatever means available. !!! Currently waiting for the moviprep to work wonders. Its bloody revolting to drink !!

Hello everyone
Why - I hope it's been bearable today and that you are off your face on the sedatives and painkillers**

I am indeed, off my face wage !!! But, have to say, both procedures weren't actually as bad as I thought they would be. Taking the solution was the worst out the lot. Turns out I was majorly allergic to all of it, and everything came out of both ends, rather than just the one ! They've removed a polyp, and taken a few biopsies.

I hope everything has settled down now Why, and that the biopsies are all normal. I was told that they whip out the polyps because there's a low risk they could cause problems with cancer in later life. My grandmother had stomach and bowel cancer in her 90's so if nothing else, it will be worth it for that.
Another question - did you lie on your side or were you in your back with legs akimbo

Yes, it said that in the literature I was given. It was weird - I saw them whip it out on the screen, but didn't actually feel them do it ! Obviously sedated up to the hilt, but thought I would have been in some discomfort today, but I'm not. My ribs ache, but I think that's more to do with me throwing up for near on 8 hours !! I was on my left side for both procedures, with knees bent, but not completely foetal, if u see what I mean ! Was asked to roll over onto my back towards the end of the colonoscopy. Had 10 biopsies in all, and get results in 4 to 6 weeks.

Moviprep! That's what it's called. Ghastly stuff. I've abandoned my gang of shitheads the past few days. Was babysitting on Fri night, and my nephew literally doesn't sit still for a second. Then spent most of yesterday in bed as I was shattered.

Glad your procedures weren't too bad, Whywonttheyletmeusemyusername. You had a rough time of it! How are you feeling now?

wageslave, I love your question re legs akimbo. I've only ever been on my side for a colonoscopy, but have a colposcopy in about 2 weeks so can look forward to my legs akimbo moment then .

Had a good couple of days, then just woke up with stomach in tatters and had to sprint to the loo. Wageslave how are you?

Hi Bold !! Glad you've had a good couple of days, and hope you're now managing some sleep (7.50am). I'm recovered from that bloody awful allergic reaction - the actual procedures didn't leave me with any after effects, no sore throat etc, or a sore arse!!! But I'm still on the toilet - more so than when I took the Moviprep. CT results have come back clear though so that's one bonus.

Hello everyone
I'm working away this week so am armed with boxes of Imodium, spare knickers and wipes. Had a good couple of days and then back to Vesuvius eruptions today, though luckily not whilst driving
Still waiting for the colonoscopy appointment to be made, though in my head it's more like a deep mining excavation

Good news why on the CT results, here's to normal )whatever that is!

Your bowel symptoms sound similar to mine before I was diagnosed with ulcerative colitis. Some people experience vomiting as well when in a flare. Any bleeding from the bowel must be investigated properly by your doctor. I hope you get some answers.

I was going to suggest colitis too. Your symptoms sound much the same as my friend who has bouts of colititis.

Hi all, how are you all ? Bold, ?? Wage - have u had your colonoscopy yet ?

Hello why. No** not had the colonoscopy yet though they did ring this week and offer me a cancellation but only with a day's notice, so not enough to undergone the thermonuclear explosion. They seemed a bit narked when I pointed this out! Been away with work all week so had a v bland diet, hardly any veg or fibre, and managed to stay a 5 on the Bristol chart proud apart from 1 day of hideousness involving a change of clothes and some Andrea wipes
What about you why, how are you doing?

No idea why that all came out bold. Andrea wipes are a laugh though

Lol !!! New name for them - seeing as they, and the toilet rolls are my new best friends !! Sounds like you had a fairly good week tho. I'm still on the toilet, but bizarrely, its only bad in the mornings. I've literally tried changing everything I put in my mouth, and even not eating at all - but its still the same. I'm seeing doc tomorrow

Good luck why. Remember to take Andrea with you
I can't work out the incidents and general pattern either. Sometimes my transit time is less than 6 hours. I don't know if you've done this before but I was taken more seriously when I described my droppings and their consistency using the Bristol chart. On the best days I am a 5. 4's are a v distant memory. Most days I am a 6 or 7

hope u dont mind me interfering but have any of u looked up bile acid malabsorption? I have had diahreea 10 or more times a day every day for 4 years now. got diagnosed with bad, gallstones and ibs. given meds but it doesn't seem to have made any difference. ibd is a simple test to rule out but apparently a lot of consultants don't think to test for it. I still think there is something going on as it isn't getting any better and I'm putting on weight despite permanately being on the toilet and only managing a sandwich a day - great fun with 2 disabled children in tow! I see a different surgeon next month so fingers crossed

Actually the same as you - I go between 6 and 7 - can't remember the days of 4 and below. I had a click on the link that passthewine posted above (thank you!), and I'm pretty certain I haven't got IBS, but a friend of mine mentioned Crohns - I don't know the first thing about it, but worth a google maybe