I believe this is more than fibromyalgia.

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I recieved a diagnosis of fibromyalgia ten years ago but in the past 18 months my symptoms have gotten dramatically worse. Sorry if this is a long post but I will try and give a full picture. It was 2 days after the birth of my last child when i started with an upset tummy. TMI sorry. This lasted 3 weeks and since then i’ve mostly had an upset tummy. So much so now that i have to use tenas if i’m going out and let me tell you, It’s bloody humiliating. I was given a diagnosis of IBS and told that it was a symptom of fibro. In the past 18 months we’ve been through 3 mattresses and i slept downstairs on our sofa bed for months because i have excruciating back pain. I can’t sleep on my back, lying on my sides for any long period of time causes my hips to hurt loads as well as my back. I’ve been refered to the pain clinic but yet again was just told it’s fibro and my body is dramatically over sensative. My fibro pain is so bad that i can no longer live a “normal” life. I’ve just posted elsewhere about the cleaning, which i’m unable to do, i try and keep busy but i often need to go and lie down during the day and i need to rest for hours. I’m sick of the doctors chalking this up to fibromyalgia, i have had an MRI a year ago on my back which came back normal. But this pain, it is not normal. My DH recorded a video of the level of pain i’m in at night and i showed it to my physio. He said he had no idea it was so bad and then said my body was over sensative. I just don’t know what to do. I want more tests, i am still young, i can not go through the rest of my life in so much pain. It really really gets me down. I’ve taken a number of overdoses in the past year. They are giving me mental health support, but they can’t take the pain away and the fatigue. And that’s what’s causing my depression. Sorry this is so long and i hope i’ve not missed anything out but if i have then just ask thanks in advance.

I also forgot to say that in the past 18 months i’ve recieved a diagnosis of hemiplegic migraines. Except these are also really severe according to my neuro because i get it down both sides of the body. Sometimes i can’t even talk. Oh and in jan of this year i had my appendix removed because i had really bad pains and then they tested it afterwards only to find it was healthy. I have no idea what to do or who to go to next. My GP is a partner in the practise but he’s the one saying “it’s the fibro, it’s the fibro.” I’m not so sure.

What medication are you on?
Are you taking vitamin D?
My pain improved dramatically once my vitamin D levels came up.
What blood tests have you had?
I know how hard it is to have your symptoms taken seriously.

I take low dose amitriptylene for my nerve pain and it works very well.
Also live yogurt settles my gut, which reacts badly to my immunosuppressant medication.
I don't know if any of that helps, but chronic disease is miserable and is the lowest priority in the cash strapped NHS.

I know exactly where you're coming from- it's hard to be in so much pain and yet nothing to see on MRIs etc.
I spent a long time trying to find an alternative cause for my pain, but there's nothing.

I'm sure my GP dreads me coming to see him as there's so little he can do.

I also have quite severe depression caused by the shitness of life with fibro.

I've just had to give up my second career because of it- I really want to work and be a functioning member of society but I just can't.

What medication do you take? When I was on tramadol my guts were okay although always constipated but since I've come off it I'm suffering a lot more with the IBS side of fibro.

Sorry I'm not much help - but unfortunately yes fibro can and does cause that much pain.

Thank you both. Right meds,
Gabapentin 1200mg 3 times a day.
Low dose ametriptalin for the hemiplegics,
Sertraline 100mg, arapriprazole 10mg, quetiapine 200mg. All for mental health.
And i usually have some oramorph before bed when the pain is just too much.

Definitely take vitamin D. If you haven't had your levels checked ask asap. Google the symptoms of vit d deficiency.
Also I have severe osteoporosis due to long term steroids and the back pain is grim.

Not sure at all if I am on the right path here but just a stab in the dark.... have you seen a chiropractor at all? Just wondering if you may have had some trauma during Labour with your last child and perhaps seeing a chiropractor may help?? Costly though I know?! Have the drs ever suggested physio or acupuncture or chiropractic support for the pain?? Is it worth investigating????
I am so sorry you are going through such a hard time and I pray you find some relief soon xxxx god bless

There's a lot of information coming out about protein pump inhibitors causing lupus symptoms. I actually had drug induced lupus and Hughes syndrome from omeprazole.
I would look into this drug and perhaps see if you can switch to ranitidine

Have you tried taking magnesium? If I've overdone it a bit (just a normal day for anyone else) I don't feel quite as shit the next day since I've been taking magnesium at night.
It also helps restless legs.

I'm on similar meds apart from the oramorph- I use diazepam occasionally if I feel really awful but can't sleep.

I'm just coming out of a massive 2-week dip - have no idea what caused it and all the normal things haven't helped. I'm resting as much as possible but it's so boring!!!

Thanks all. A PP mentioned ameprazol, i take arapriprazol, it’s a mood stabiliser.
Another PP mentioned accupuncture, i’m currently having a course. Not noticed any difference so far though sadly.
I am waiting for my bloods to be re-done, i’ve heard about magnesium before so will look into it. Unfortunately I can’t afford a chiropractor but thanks for the suggestion.

Have you tried pregabalin rather than gabapentin ( they tend to prescribe gabapentin as its cheaper ) .

Do you know your vitamin d level ? With an auto immune it needs to be higher than normal

@Elfride I do take diazepam as well sometimes, that or zopiclone. i’ve just come off that one so i’m a bit buggered at the moment. The oramorph helps with the pain for all of an hour which helps me drop off, but as soon as it’s worn off i’m awake again. I don’t want to keep taking morpheme though. I’ve been on it for 2 years on and off. Today is a terrible fibro day. As well as the usual aches and pains i’m exhausted, i’ve got a fever and i’m alternating between freezing and sweating. I’m sitting here in my fluffy dressing gown, under my duvet when i’m shivering, and stripped off the next. I just can’t regulate my temperature today and i feel utterly crap to go with it. Bloody illness.

Have you had your B12 checked?

I had a diagnosis of Fibromyalgia, felt shit for years...pain, IBS, depression & anxiety then diagnosed with severe B12 deficiency and given injections & boom, no more Fibro

I obviously never had it in the first place (although of course you may well do) but my quality of life has improved massively since my correct diagnosis, don't let them fob you off

I 100% believe Fibromyalgia is a real illness but I also believe it's often diagnosed when they don't really know what's wrong with you

Sometimes you have to ask for specific tests, and chase up results.
I had a receptionist tell me ovef the phone that my results were ok. When I dragged myself back to a different gp I discovered that my ferritin and vitamin D levels were practically non existent.
I am trying to manage a couple of debilitating conditions and I have to be on the case all the time. The current situation IME is that if you have a chronic condition you don't get much support. You just have to manage.

A family member has fibromyalgia with exactly the same symptoms as yours. They are looking for other explanations but doctors insist there is nothing else going on.

You are exactly right! It’s so frustrating. People say to me “goodness isn’t it difficult managing all your kids and being visually impaired?” Give me that over fibro and hemiplegic migraines any day of the week.
So what tests do they automatically test for and what should i ask them to test for? I’ve tried asking my GP to test for X and Y before and he prefers to jump through the hoops first. “If the result comes back as this or that then we’ll test.” I get that the NHS needs to cut their cloth accordingly but it isn’t half frustrating.

I’m in a similar boat although different bowel issues - have been there though. Mine were caused by endometriosis which was misdiagnosed as IBS for years. Do you have any gynae issues? Do you have a distended abdomen that doesn’t go down? How old are you?

Have the doctors thoroughly checked your vitamin levels and your thyroid?

Also I’m on morphine too but all the time, have been for years. I don’t particularly want to be on it but I need it to be able to have any kind of life. Would they consider a low dose of slow release morphine, or another opiate, so you have a constant level of pain relief?

@SinkGirl I’m 29. Have had 5 kids, mum had endo until she had a full hysterectomy. I suffer extremely badly with my periods, they are so so heavy it’s awful. I can’t leave the house, have to change constantly and the doctor suggested a coil. I won’t have one though. I’ve had ovarian cysts before and yes, my tummy is in a constant state of bloat.

OP you really need to throughly investigate how diet can help you with your signs and symptoms if you haven't already. Going on an low inflammation diet might make one hell of a difference to you?

@SinkGirl I’ve been on MST before but i need the hit that comes with the oral morpheme. Lol that makes me sound like a druggy but what i mean is that i have a range i can play with, minimum dose is one thing and maximum is another and i take what i need accordingly. And yes, if i’m honest i do take it at other times of day as well, but i really try not to take it. I tried to describe the taste to DH he said he thought it sounded like a nice liqueur. Silly man. I love the bones of him, i don’t know what i’d do without him really.

I take both. I completely understand. I find that I need to take less overall if I take both a slow release version and then oramorph, but I take oramorph 4-5 times a day. I know it can make you feel rotten initially but honestly after the drowsy stage passed I find that it enables me to clean, take care of the kids etc.

If you are faecally incontinent, that needs to be investigated properly. You need to be a colorectal specialist IMO - people with IBS don’t generally have this issue to this extent.

Since it started after birth have you seen a gynae? Have they checked for rectocele and fistula?

You say you have a physio - is that just for general pain?

Have you seen a rheumatologist? Any other consultants other than the Pain clinic? Who did you see there - I’d recommend seeing a neurologist who specialises in pain as they understand more about neuropathic pain.

Do you feel like they have sufficiently excluded other diagnoses before coming to this conclusion?

I would recommend making an appointment with your GP, taking your husband with you. Let him talk for you if you don’t feel you can. Tell them that you have zero quality of life, you cannot function, you want to rule out other problems and you want to start with x (personally I would start with the gastric issues as resolving those will make you feel much better overall).

Take videos. Take photos. Take photos of the damage done to your bed / sofa / whatever. If you’re anything like me, your GP probably has no idea how bad things are because you struggle to get it all out once you’re in front of a doctor,

This isn’t right.

And I really don’t say this to scare you at all because I’m almost 100% sure that your gastric issues are related to childbirth, but please have a look at the symptoms of gynae cancers like ovarian cancer as uterine cancer and see if any of them apply to you. I only say this as my mum had ovarian cancer and gastric issues were one of the first symptoms she had BUT she was much older than I suspect you are and it’s very rare when you’re younger. I just want to make sure you’re being thorough if your doctors aren’t!

There are companies where you can do private blood tests via finger pricks. I use medichecks. It would be worth getting an array of tests done if your GP is unwilling. There’s a “well woman” set of tests that includes an awful lot and may help you pinpoint things - it’s about £130 in total but would be well worth it if you can find the money (there are cheaper sets of tests too which don’t test as much)

I miss normal oramorph, the taste was passable at least. For years I’ve been on the 10x strength concentrated stuff and it’s genuinely disgusting! I’m glad your DH is supportive, makes all the difference

@SinkGirl yes the 10X stuff is vile! It makes me shudder every time lol.
Thank you for all of your suggestions, I’ll check out medichecks as my GP is frankly useless.
I got the diagnosis 10 years ago and it wasn’t really thoroughly investigated, i just went to my “then” GP and he refered me to a rheumatologist who prodded me a bit and diagnosed fibro. All the blood tests i’ve had since then have shown very slight inflammation markers and once i had to take a loads of vit D gel tablet thingies because i had very low vit D. I just have a feeling there’s more going on, and i’m not saying that because i want to find answers, it’s just that this is not normal. And i can not live my life like this any more. I’m 29 for goodness sake.