Hi this is my first post as I'm unsure whether the symptoms and pain I've had for a long time is Fb.

Where do I start.......... ?

I ache from top to toe especially my legs, hips and lower back. My legs are very tender to even touch. The worst thing of all is that I can't sleep at night because my tummy is so tender and sore. I wake in the morning hurting all over and extremely exhausted and struggle through the day with fatigue.

I have Type 1 Diabetes (since I was 16) and now on an insulin pump which adds to my exhaustion.

Any help would be appreciated.

Thank you


19 Replies

  • Good morning Kim

    Welcome to our lovely forum 😊

    My personal advice to you would be to ask your GP for a referral to a Rheumatologist. They are the Consultants that usually diagnose Fibromyalgia.

    I don't know how long you've been feeling this way, but it can take years, even decades to get diagnosed. However, Fibro is becoming slightly more known now so hopefully it won't take that long.

    Good luck

    Hugs Lu xx

  • Dear Lu

    Thank you for your kind reply.

    What symptoms to you have and have you had a diagnosis?

    Kim xx

  • Hi Kim

    You're very welcome. Yes I have a formal diagnosis of Fibromyalgia. I also have Chronic Fatigue/ME. I've had Fibro for over 30 years.

    I have over 27 symptoms to accompany my Fibro, but my main ones are constant severe relentless pain in every single part of my body, insomnia, daily headaches that can turn in an instant to a migraine, IBS, fatigue, chronic depression, the list just goes on and on.

    Fibro takes so long to diagnose due to the fact that everyone with Fibro has very different symptoms, although the main ones are pain and fatigue. Everyone has it to a different level too.

    If there's anything else you want to ask me, feel free to ask away. I'm more than happy to try and help.

    Lu xx

  • Hi Kim,


    Sorry to hear you are suffering. Your first port of call needs to be your GP so they can run bloods to rule out other things.

    What you describe could be fibro, as everyone's pain varies massively!

    Take a look at the FMA website for loads of info: fmauk.org

    In the meantime I can recommend heat pads/water bottles, buying a TENS machine and doing an exercise/pain diary to try to work out what triggers your pain. I feel the pain 3-4 days after overdoing it, exercising or a stressful situation. You can figure this out using a diary.

    Good luck xx

  • Hi there kim2. Sorry to hear that you are so uncomfortable.

    You don't say whether or not you have seen any doctors in regard to this problem. The aches sound like Fibro but it would be remiss of me to make a diagnosis. I'm certainly not qualified for that ha ha.

    I suggest that you make an appointment to see your GP and start from there. Don't be afraid to ask if Fibro is a possibility. Many of them wouldn't think of it.

    I'm sure one of the administrators will give you links to useful websites, in particular Fibromyalgia association UK.

    In the meantime I hope you have a restful day, don't let it get to you. That is easier said than done but we've all been there. You will get support from the folk on here. They are a font of knowledge and comfort. Look forward to hearing how your journey progresses 😺

  • Hi Magnetta

    Thank you for your reply. My GP took bloods which came back OK, I also had a scan of my tummy and it was clear.

    There seems to be no triggers....The pain is with me in my legs, muscles, joints, tummy all the time.

    Kim x

  • Welcome to the forum they really are a kind set of people who try to help each other. That your bloods came back with no positives ISNA classic way that fibro is diagnosed as at the moment there seems to be no blood tests that can detect it whereas if you had RA the bloods would show that. Most of us have quite diverse symptoms and they can unfortunately vary from day to day, hour to hour. They can mysteriously ease for a bit and then come back with a vengeance.

    Keeping a diary to see if there is some sort of pattern can help noting down what you do, what you eat, how you sleep could tell you if there was any particular triggers. I think most of us have found that if we are under intense stress which I am at the moment we are always worse probably because our muscles already ache and when under stress we hold them even tenser.

    IBS and insomnia are classic illnesses that seem to go with this illness. Have you tried surrounding yourself with soft pillows at night or even one of those long ones that pregnant women use in order to get more comfortable. I actually bought an electric blanket and putnit on low before going to bed and I have found that it seems to help the aching.

    Do have a look at the mother site as several people have suggested as it can give you some really good information and if you can find a good local support group that can also help.x

  • Stress is a real killer isn't it.....my body just doesn't seem to have any capacity to cope with it especially if prolonged. Hope you can finalise your house move soon and relax again. All best.

  • Unfortunately buyer pulled out three weeks down the line. We really need the money to carry on with the work needed on the bungalow, Oh over there now feeding the workmen. With all the negative things happening in our lives at the moment trying to keep our heads above water is difficult I need a pair of water wings I think Iwonder if I could get some cheap ones on eBay.x

  • Sorry to hear that....buying and selling houses is just stressful. ....keep paddling and hope a life raft appears soon to end your dilemma. Take care.

  • I agree with the people above. Diary, see rheumy or even neurologist, tens, physical therapy, warm baths, rest, meds , try to get as much sleep as you can, heating pads it all depends on your body. I have several issues one of which is nerve damage in my back which causes leg pain. You might have them check your back for bulging disc.

  • Totally agree with all of the above. Do you the tummy pain could be ibs? Maybe try a food diary? As food intolerance can trigger pain in muscles.

    When I went to the doctor I must of sounded so extreme.... 'I want a full body mri' were my exact words and I think I threw in I have all over bone cancer. X

  • Did you get your full body MRI?!?

  • Iv had mri on spine and nothing wrong. Had 4 mri's on right arm but that's from a tumor. Had nerve tests on arms. And they were fine. Had Doppler scan on artery on my collar bones I do have thoracic outlet syndrome in left arm but surgeon wont touch it as to dangerous and my biggest complaint was symptoms that didn't match the compression soooooo 'sigh' that's when I got the fibromyalgia mentioned to me. Just like all of us poor buggers loads of tests loads different doctor's :-(

    Sorry im giving you my life history LOL my whole twenties was spent being none stop tested on! X. X

  • No need for any sorry. ....that's a tough road for anyone to travel. My own story weaves around senselessly ....I envy those who had a clear unset of symptoms and quick diagnosis. Take care.

  • Hi Kim2

    I sincerely hope that you are feeling as well as you possibly can be today? I am so genuinely sorry to read that you are suffering and struggling and I sincerely hope that you can get a diagnosis one way or the other.

    I also agree with the other respondents, as a referral to a Rheumatologist could help you tremendously. I want to genuinely and sincerely wish you all the best of luck.

    All my hopes and dreams for you


  • hi kim so sorry your in so much pain the first thing to do is ask your doctor to refer you to a rhematolagist they will ask questions then examine you fibromyalgia can hit you in every part of your body sorry to say it affects us all in diferant ways i finf that having a warm bath not hot can ease the pain and help to relax you a bit as for sleeep what is that i get about 3 hours a night this might help if you google 100 symptoms of fibromyalgia it will tell you how it can affect you mostly people have between 20 and 30 .it can affect your hips legs .i have asthma ,underactive thyroid fibromyalgia perifual neuropathy its a posh word for severe nerve damage in my feet its agony to walk .osteophorisis i am unable to eat solid food or drink liquid due to damage to my throat so i have a gastronamy peg in my stomach i have to fed myself with a syringe just beeen diagnosedwith an overactive bladder i can pee for england we all get down with the pain i cant take any pain releif get bad side affects got to see a ghynolatist sory about my spelling sending softest gentle hugs my new friend .hound your doctor till you get what you need i tried a tens machine it does help a bit spend a lot of time in bed ,

  • Hi Mason, thank you so much for your reply, it seems like you have a lot to contend with :-(

    I will check the 100 symptoms of fibromyalgia and see whether some of them apply.

    Everyone has been very kind and helpful, today I've had extreme pain in my muscles at the side of my neck, transferring down, which hasn't happened before. Is that quite common? Painkillers and a hot water bottle tonight!

    Hope you manage to get some sleep.

    Best Wishes


  • hi kim i do get neck pain mostly from stress i use a bean bag that i put in the microwave to heat up it helps a lot badger your doctor for a referal to a rheumatolagist try to keep possative we one big family here sending softest hugs my friend .

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