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Hello,

So I have been officially diagnosed of fibromyalgia but my gp has referred me to uclh hypermobility clinic for the eds type 3 as there are inconsistencies in my diagnoses. They've done all my bloods c.f. factor citrillunated peptide anti bodies thyroids magnesium zinc ferretin etc., and I have just seen my specialist who believes that my current pain might be my first full blown flare up. I have had it consistently for 2 weeks now and I've attempted suicide twice I was made homeless two weeks ago, so it's believed to be stress induced. I am currently in temporary accomodation which my social worker had to fight for whilst the council made a decision in whether I not I'm a priority, according to my council I am not a priority and in their eyes I can't even be classed as disabled. My question is how do I deal with the pain? Quite literally everything hurts I've had diarrhoea for 6 days straight I am constantly tired the yawning is driving me mad also having spasms in most muscles cramps in hands and legs and pins and needles in my feet. Any suggestions would be helpful as the pain specialist suggested chilling out of taking more painkillers which isn't helpful when you're on the max dose.

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  • sound as though your having one horrible time love. im glad that you didnt succed in your suicide attempts you must be very unhappy to try that. i'v done it too and i was so unhappy and in terribe fear coming of anti psychotics. a person who tries to end it all has to be so low that they dont see any way out. however you'v now got a social worker helping you. and got you a place to stay for the time being. i do hope that you get a house soon. i'v not got fibro but i wanted to say hello anyway after i read your post as i can understand pain and suicide attempts. there are many on here with fibro. so someone will come along and be able to identify more on that side of things for you. this is good place to be and i'v met many nice people who i can talk to about things and thats good for me, also your pain, im not going to tell you not to take your medication as im not in your shoes. pain is a terrible thing. im glad that youv come and joined this forum and im sure you will find people who can tell you how they cope with fibro. love grace xoxoxo🖐

  • You may be low on vitamin D This can affect your mood if it is low. If you don't get much sun you really need a supplement. I have something like fibro but not diagnosed as such, but have pain everywhere My legs hurt the worst. Started taking Amitriptaline and am starting to feel better. It's a anti depressant and it helps wth the nerve pain as well. I hope and pray that you get the help you need

  • Always had low vitd already on supplements. Tried amitriptyline twice did nothing for my pain made me a bit loopy too

  • Idea only slippinginto chaos - Ask for a printout of ALL your bloods done and their important ranges and Post them up on Thyroid Uk, forum here on Health Unlocked.

    Fibromyalgia is a symptom of both Low Thyroid and Vitamin b12 Deficiency, Doctors are well known by patients to over look both these patients. Pins and needles, are also symptoms of both Low Thyroid and B12 Deficiency. With fibromyalgia you might also be low in other deficiency's too, again often over looked. I read these 'over looked' patients stories daily.

  • Already done all the thyroid research definitely not low. My b12 deficiency for corrected over a year ago had many blood tests since to confirm i was no longer b12 defiecient still iron deficient aneamic though on supplements for that and have been for over a year

  • Sugestion only SlippingintoChaos, since you still have presenting symptoms and you had bloods done for B12 D and Low Thyroid.

    Most Thyroid Uk or PAS forum members do not rely on the Doctors being told you are OK/nothing wrong with you if they still are presenting with B12 Deficiency or low thyroid symptoms. (which you seem to be)

    In America and Europe they have narrowed their thyroid ranges so not so many patients fall through the net. So in America or Europe you might be diagnosed with Low thyroid, but not here in UK, you would be classed as normal, despite any presenting symptoms that might be causing you lots of pain.

    Also PAS Pernicious Anemia Society go with higher B12 results than Doctors rely on as you can still have B12 terrible presenting symptoms, yet Doctors might class you as normal, nothing wrong with you. Many B12 D patients have been let down in this way, I read their stories daily on the PAS forum. You mention you are still having pins and needles so that's why I am wondering.

    Did you ever ask for your blood results printout and their ranges ?

    Also taking some iron pills can cause diarrhea, not saying all iron pills do, take a look at your iron's side effects on the leaflet. If it is down to the iron pills it takes up to a week to get back to normal, once off them. (not saying yours is though.)

    These are all Just suggestions only S.intoC

  • My iron pills constipate me but I stopped taking the iron supplements years ago anyway sort is the only thing that's ever helped me I was born aneamic so only way my iron levels go up is a couple of weeks of spinach and mackerel lol sounds stupid but I do what works

  • Yes they constipate too :)

    No doesn't sound stupid if your body needs it SintoC

    Spinach and mackerel I quite like. :) :)

  • Kippers seem to help as well haha

  • The Stomach has settled anyway more of the normal ibs pain now cramps back spasm constipation simpler lol. Any suggestions for the stiffness I've only slept 3 hours and I'm more rigid than a plank of wood I've tried different sleeping patterns more naps and per continuous sleep but I just always feel stuff like someone has tightened some boots around my knees shoulders elbows ankles wrists and back all whilst I have continued back spasms :/

  • Good to hear sintoc. though not good cramps and spasms.

    For long term stiffness a high safe dose of vitamin D3 'might' cure, it did for my stiffness pains, including lower back pain, all stiffness and pains went almost overnight, but not sure if your type stiffness is the same ? Though D3 is good to help stomach too as anti inflamatory.

  • I'm still waiting for my vit D bloods to come back think my doctor has the same concern was talking about some injection thing if my bit D was still lol

  • Interesting about your vitamin D :)

    Can you ask for a printout of all your bloods done and their ranges ?

    Many on Thyroid Uk and the PAS Pernicious Anemia forums now ask for their printouts for their own records. On Thyroid uk, we know not to accept NORMAL as a result for Thyroid bloods. In other words we like to double check them with other members. It is easy once you learn to read the necessary bloods. My Doctor told me my Thyroid bloods were OK, yet I still had thyroid presenting problems. I managed to sort them myself thanks to other members helping me. Many B12 Deficiency and Thyroid patients are told NORMAL, yet are not feeling NORMAL.

    Do think about getting your blood printout ?

  • Vitamin D and Amitriptaline may help. I wrote a long letter to you and don't think you got it. I hope things go well for you. I have something like fibro to if you ever want to talk

  • I'm on vitamin D supplements already they tried amitriptyline twice but it didn't alleviate pain and only exasperated some of my eupd symptoms

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