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?

Oh yes, I know exactly what you mean. See we can talk about this stuff cos we know exactly what it's like. Whereas if I was to try and talk to, say, my sisters about it they'd be all 'tmi! Disgusting!'. But there's none of that here. We aren't squemish .

Re your sample, hmm, difficult. If I had to try to catch a sample in one of those specimen posts, it would bounce off the bottom of it and spray all over me. Now I'm tmi-ing .

Re your sample, if you, ahem, ladle it out of the toilet it'll be waterded down/contaminated by toilet water. Could you squat over a bucket then scoop out a sample to put in one of those specimen pots?

These are not conversations I ever thought I would be having . I hope your appointment goes well tomorrow. Will you let me know how you get on?

I am thinking of investing in a portable commode, but until that arrives, your bucket idea is a good one. I think I will line it with a bin liner so there's less to clean out afterwards
On the upside I am able to describe the Bristol stool scale with some accuracy

That's so funny, I was just thinking earlier that I know the Bristol stool chart as well as any HCP . I've been a 7 for like a month now! At least we've gained some medical knowledge from our hideous realities .

Bin liner is a good idea. Oh, our lives are ever so glamorous .

Another upside... If DP and I ever manage to have babies (5 miscarriages and looking less and less likely) even the vilest of nappies won't phase me. I'll have cleaned up so much worse .

God and I just realised that I mispelled watered as waterded a few posts up. I can spell, I promise!

empty ice cream tub....not that I speak from experience you understand

We have a rather unique range of experience, eh Katymac. Oh to have a life where you don't have to consider such things!

I'm actually having a very bad night tonight. I'm in a lot of pain. I've got a lot to worry about at the moment so that's all playing on my mind. And when putting out the bins I accidentally trod on a slug. It was half squashed but slithered away slowly, antennae twitching. So now I'm sobbing that it's going to die slowly and in pain because of me. I'm very weird, I know. But I feel so wretched.

Oh dear

On the upside - I have myself so undercontrol with the suppliments that I coping with a holiday in a motorhome with a chemical loo - which I am sure you can't even imagine right now or consider!

Guts man was lovely. Said I have a range of symptoms which are unusual to have at the same time, but he couldn't find the "mass" around my stomach that the GP detected. Most likely he thought would be thyroid (but I've tested negative for that), coeliacs or vitamin D deficiency, or could be unexplained "as one of the mysteries of the middle aged gut", otherwise known as IBS. Having an ultrasound tomorrow, and being lined up for colonoscopy, endoscopy and CT scan.

It was worth going - he said I looked much younger than 50 . But he didn't look at my bum, which feels about 500, and would have changed his mind quickly.
And he laughed when I offered my stool sample - he didn't need it, but thanked me for the offer
I have saved a margarine tub in anticipation of the next request, luckily it was bin collection day here so the gross bin liner isn't loitering

Another good upside, katymac! Hope you're enjoying your holiday.

wageslave, so glad that your appointment went well. Ultrasound today? That's fast moving (much like our bowels ). How'd it go? Am laughing at your youthful face but centuries old arse . I know the feeling!

What kind of CT do you have to have? Last one I had, I had to drink the barium, which was so metallic tasting, and have the injected dye. If you have to have that, just to warn you - it'll make you feel like you have peed yourself. Again, how glamorous are our lives?

Hello Kitties
Ultrasound was normal thanks, done by a very lovely young woman, no signs of kidney stones or any lumps or bumps around my middle . I don't know what to expect re the CT scan, they just said not to eat anything for 4 hours beforehand, but that I could drink clear liquids. I don't drink alcohol but I thought it would be funny to go in bladdered on vodka or gin
Now I'm waiting for appointments for both colonoscopy and endoscopy, hopefully not at the same time or I would be like a pig being roasted on a spit. Am a bit worried about whether the colonoscopy will cause a geyser of shame to erupt, but I guess they come prepared with one of those chemical protection suits and helmets
We've got a caravan Katy, I'm intrigued about your supplements and what they do. My DH suggests I just need a cork

I meant sh1t but shame is equally applicable

How rude of me - I didn't ask how you are doing today? Have you been jetwashing the bathroom again?

So glad that the ultrasound was normal, wageslave. Great news. You should totally go for your colposcopy pissed on gin . But seriously, when they offer you the sedation, take it! My Mum had one with no sedation (crazy woman) and said it was awful. I rather enjoyed the sedation, first my lips went all numb, then my face, then the rest of me. It was a lovely warm fluffy feeling. Yeah it's a good thing I don't do drugs cos I suspect I'd like them a lot .

Haha at geyser of shame . That's my life right now. Yep, jetwashing the bathroom again today! Between visits I'm watching Grey's Anatomy on the sofa with a vomit bucket cos I've been vomming loads today too.

It's been a fairly relaxed day, except for when I came down this morning to find that one of the cats had pissed on the sofa. So had to strip all the cushions and wash the cushion covers, and soak the cushions. Good thing I have a second sofa to flake out on!

How are you feeling today?

I'm ok today thanks, but I think I've developed a fissure! Have you tried looking up hippos pooing on YouTube - it's me on most days

I can honestly say that I've never looked up pooping hippos on YouTube. But I'm so going to now. And think of you when I watch them

There is a very strong resemblance, luckily you tube doesn't do scratch and sniff

'luckily you tube doesn't do scratch and sniff' 😂. Yup, I definitely feel like a pooping hippo right now. The medication related weight gain was making me feel fairly hippo-esque anyway. How are you feeling today? I'm still a walking shite factory . Have barely been able to eat in two days, yet am still, er, a 7. And still putting on weight. So fucking annoying!

Hi, can I join you ? I'm going thru this now - have had my CT scan (with dye), and this week, have my ultrasound, a colonoscopy and an endoscopy. Exactly the same symptoms as you guys. Not a nice place to be!

Just to say that many of the symptoms you are currently suffering are known side-effects of Lyrica/Pregabalen
www.drugs.com/sfx/lyrica-side-effects.html

I had to discontinue this drug after only a short time as it made me so ill, shaky and too weak to get out of bed

Welcome, Whywonttheyletmeusemyusername. So sorry that you have to join us, but you're very welcome to our gang of... Er, well I don't know what to call us actually. Gang of shitheads?

How are you feeling? Did the CT dye make you feel like you were pissing yourself? Good luck with the tests this week. It's daunting, isn't it? A pro tip - take the sedation for the colposcopy. And the endoscopy. Actually, just go with sedation for anything that has 'scopy' in the title . Not that I want to frighten you, you'll be grand, they're not too bad at all. Have you to do the 'one day of bland food, then one day of no food' before your colposcopy? And the sachets of laxatives? I found Bovril on the no food day helped (if you're allowed it). Kind of tasted like soup!

Keep us posted as to how your tests go. There's lots of support here. Have there been any suggestions as to what your diagnosis might be?

It's not a nice place to be at all. Tough going, isn't it?

The diarrhoea could be a side effect of the medication that you're taking.

Has the diarrhoea got worse since you changed your medication?

Thanks Lunde and passthewineplz. No, the diarrohea has been this bad since before I started taking Lyrica. Have had regular bouts of it for the past three or four years. Lasting anywhere from a week to a month each time. The only side effect I've been having is the weight gain. Everything else was pre-existing.

You probably already know that IBS is associated to fibromyalgia.

The NICE guidelines state that Loperamide which is a antimotility agent, should be recommended for diarrhoea.

Has it been suggested by your GP, or have you tried it in the past.

Buscapam (sp) helps with the spasms, but doesn't stop the diarrhoea.

The guidelines are here: www.nice.org.uk/guidance/cg61/chapter/1-recommendations#clinical-management-of-ibs