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?

I have been referred this week to a specialist because I have lost control of my guts and a "mass" has been found. Please don't put up with it, return to your GP and ask for a reassessment.
Let's hold hands and hope that the diagnosis is easy and the causes are trivial

Oh wageslave, thanks so much for responding. I was feeling very frightened and alone.

Feck, I'm so sorry for what you're going through. I really, really hope it is indeed something trivial. for you.

Yes, a mutual handhold would be lovely.

I'm going to have to go back to my GP. It's a fucking nightmare though, I'm in Ireland so have to pay €60 to see my GP. Waiting until DP gets paid next week so I can afford it .

You can't put up with that, that's awful for you. I have ibs and that gets my very down but what you are experiencing is not normal. My mil had something similar for months and months (was going to toilet up to 10 times a day) gp kept putting her off saying it's ibs and prescribing her buscopan. Eventually she pushed for more tests, turns out it was a benign intestinal tumour, she is having injections and is so much better. Hope you managed to get some help soon

Thanks so much, Snugglepalace. Glad your MIL is doing better now.

Yeah, you're right, I can't go on like this. Going to get to the Dr on Monday and push for it to be taken more seriously. My GP is lovely but can be a bit laid back about certain things sometimes - like I'm sure that diarrohea is of course something everyone gets from time to time (which was why I didn't push the issue the first time I saw him about this and he said that), but what I've been experiencing must be far from normal! Going to lay low for the weekend and keep flinging back the Buscopan as it does help a wee bit.

Hopefully the appointment on Monday will be helpful - will report back!

And feck, I've just scrolled back and realised that all of my posts are very long. I'm seemingly incapable of brevity . Thanks to you both for taking the time to read .

Bit of blood is not normal - your GP needs to refer you for more tests.

Hope you feel better soon. Keep asking questions till you get satisfactory answers.

In the meantime, you might get some relief from herbal teas - peppermint tea, ginger tea and chamomile tea are all soothing for sore digestive systems and are cheap to buy.

Do try & get a referral

Also ask for your Vit D to be checked & your B12 too (alongside all the normal suspects, iron etc)

Thanks Hulder. Will push for that when I see the GP on Monday. I probably need to be a bit more assertive - I have a tendency to just sit and nod. Like when he initially dismissed me with 'everyone gets diarrohea sometimes' I just said oh, okay. Even though I knew what I wasn't experiencing wasn't normal.

MollyHuaCha, thank you. I've been drinking peppermint tea and it does provide some relief. Will absolutely try ginger and chamomile too.

katymac, interesting re the Vit B, thank you. Will mention that to the Dr. My Mum has a fairly severe vitamin B deficiency - has regular injections. I also have and underactive thyroid, could that be linked?

Thanks so much for all your lovely and helpful replies.

And apologies for another ridiculously long post

Yes - I have CFS, FM, horrific IBS, hyper mobility but upping B12 (enormously), Vit D, Iron, Folate, Zinc & Magnesium has really helped my whole system

It hasn't cured me but life is so much easier to lead

Jaysus, katymac, that all sounds tough. How do you get through each day?

It hasn't cured me but life is so much easier to lead. This really resonated with me. My life is very hard to lead right now. My world has become very small. I hate it. I'm at home all the time. Everything is a struggle. I spent 2 hours yesterday trying to summon up the energy to walk to the shop, only a few minutes walk away.

I used to have a great job, I was always busy, and I loved it. Now I'm a shadow of my former self. It's so horrible.

I'm on an upwards swing - gone a bit off piste with the NHS as they weren't meeting my needs tbh

Apparenty I was depressed - I went for 4 months wth a sore elbow which was depression untl a physio diagnosed tennis elbow!

Diet wise try fodmap (google it) but it's an exclusion diet which can't be maintained

One day at a time OP.I'm still waiting for an appointment with the gut specialist. I am so bloated at the moment I look 6 months pregnant, not a good look on a 50 year old .
I never thought that a measure of a successful day would be going out of the house and not crapping myself before I returned

Thanks so much, katymac. I have looked up the low fodmap diet and am trying it out. It's going to be tough for me. I guzzle milk. Like one week I looked in the recycling and realised that I had three empty three litre carafes in it. I'd drank nine litres of milk in a week . Also love onions. But if it helps then it'll be well worth it.

Yeah my ex-GP diagnosed everything as depression. It's why I found a new GP a few years back. Old GP did blood tests, noted that I was anaemic and had an underactive thyroid, and advised me to read his book about stress and depression . New GP did bloods and immediately put me on eltroxin for my thyroid. I felt so much better very quickly. It's very frustrating to have everything written off as depression. I mean, I am depressed. But because of my awful health and consequent inability to live my life as I want to. It's a result of my shitty health, not the cause of it.

Thank you very much, wageslave. Yeah often lately that is the measure of a successful day for me too. Definitely not what I expected for my 30's. I've had a rough few days. It's a load of shite, isn't it? You poor thing. I've had the pregnant looking bloat before! How are you feeling now? I'm wide awake with ridiculous back pain (have several fused vertabrae that cause me serious pain, yep I know I sound like a complete whinger with endless problems, but alas that's my reality).

I'm exhausted, so haven't RTFT, but wanted to add this LINK for you & suggest you read the info in the link & then push your GP to test you for Pernicious Anaemia. My fibro & M.E turned out to be that & EDS

I would also insist they test you for Heliobacter Pylori infection, which is a common gut infection that can become chronic & cause inflammation in your gastric tract. This alone can block B12 & other vitamin absorption. The drugs you mention made my daughter worse too, they can also interfere with vitamin B12 metabolism, she went on to be diagnosed with functional B12 deficiency, so it made sense in the end. Her B12 injections in our doctors words, had a nothing short of miraculous effect on her health & git her walking again after 18 months in a wheelchair

Just noticed you have Thyroid trouble, this could mean you are more likely to have Pernicious Anaemia as autoimmune disorders tend to come in gangs. The anaemia is relevant too

Wow, thank you RockinHippy, that's some great information.

I definitely have to push my GP to investigate further and expedite the rheumatology referral. I really hate taking so many drugs, and I know they can cause further problems. My Mum read up on lyrica when I was prescribed it and is in a panic about me taking it. Though I'm not really experiencing any adverse affects at the moment.

That's amazing about your daughter. Truly amazing. I'm so glad she's doing so much better.

I've been quite bad the past few days. My balance has been terrible, I keep dropping things (like my hands just stop working) choking when I try to swallow, and falling over. I've been having heart palpitations (I think, keep getting this weird squeezing feeling then it's like my heart skips a beat), been very dizzy, and waking up gasping for breath and struggling to breathe.

Dr again says to wait for rheumatology referral. But that could literally take years. Meanwhile, I have to go for a colposcopy soon, got the letter today. It's my third one. Oh what fun!

Just wanted to mention coeliac disease as a possibility - have you ever had a blood test for it? That could explain diarrhoea and bloating. It would also leave you very tired and possibly deficient in lots of things like Vit D, B12. It is also autoimmune and linked to hypothyroidism.

I'm pretty sure I haven't, Fixmylife. I've had a gastroscopy and a colposcopy, but they were about 5 years ago. So I assumed that they ruled out anything like coeliac, but then that was before my bowels got as bad as they currently are. A medic friend suggested diverticulitis.

What happens is that my stomach starts gurgling. Then the twitching feeling in my lower abdomen starts. Then I can feel my sphincter start to open and then the poop flows down my legs. Gross, I know.

Bold, I've alalso got back problems and I take gabapentin and duloxetine for that too, and I'm wondering whether the painkillers have had some really bad impact on my guts. I'm keeping a diary symptoms to see if I can spot which foods are meeting that might be a trigger. But the only common thing I've spotted so far is that I crack myself several times a day!

Crap not crack! Though my poor bum is worn out , so I might have cracked it

Bold just to throw in, I'm in Ireland too - rural though- and our GP will often wait to be paid if you are feeling bad. I'd ring and see rather than wait for payday.

Oh wageslave, gabapentin! I had that, it did not go well. Spent two days flat on my back staring at the bedroom ceiling . It was grim. The back pain is a killer. Makes even standing up difficult. Haha, yeah I kinda feel like I've cracked my arse too! It's probably totally oversharing, but I've gotten through 18 rolls of loo roll this week. Not very environmentally friendly .

7Days, my GP is pretty good for allowing people to pay later. I've actually seen him this week. I once again got the 'take your meds and wait for the referral' speech. I know I have to wait, and there are clearly people on the waitlist more in need than me. But it's just so frustrating. I'm stuck waiting. At least my local colposcopy unit is lovely. I'm dreading going there again, hate having my feet in stirrups and knees by my ears, but they are so kind and caring, so that will make it a lot easier. Typical that I'm stuck waiting for an appointment that I desperately want, but got the one that I dread just sent to me out of nowhere .

I've got an appointment with the guts man tomorrow. Been asked to take a stool sample but not sure how to, other than using a ladle to scoop up the soup from the loo. I know that's far tmi, but you fellow sufferers will know what I mean