Hello

Hi, im Mick. I am new to this, i am a 51 year old male from Doncaster, diagnosed with Fibromyalgia a couple of years ago. I am looking for people who understand what i am going through. I have difficulty doing almost everything. I try to get on with it , but fibro just puts the brakes on. Im not on any Doctor prescribed medication at the moment. Have tried pregabalin and one or two others. Nothing seems to work ! I have also had accupunture, cognative therapy ( its all in your head) bulls..t. Hydrotherapy, Physio therapy. xrays, Mri, really dont know where to turn next. Hence posting on here. Even Doctors who are supposed to be specialists seem to know nothing about this debilitating condition. Would like to come to a meeting, if thats ok. where and when ? Maybe i could gather advice from fellow sufferers. Need Help ! Thank you in advance.......Mick.

36 Replies

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  • Hello Mick just up again as usual because of pain. sorry to hear you are not finding it easy to find the right help. I do not think this site. arranges meetings. people do make friends on here, and if they live close enough meet I think. There are administraters on here when they see your post will be able to point you in the right direction. Also as more of the lovely people on here see your post I am sure they will have a wealth of information, for you. I have been on site for a couple of months, and find it has helped and enriched my life a lot, being with people who know what this illness fees like and are such a friendly kind, and Wonderful lot. Hope to see you around on here now you have found site as they say gentle hugs for you xx ugggycat (Julie)

  • Thanks for your very warm and friendly reply Julie, Warms my heart. xxx

  • my pleasure x

  • Hi m1keym005e

    Welcome to the forum and it is wonderful to make your acquaintance. I am so genuinely sorry to read of how you are suffering and struggling and I have pasted for you below a link to the FMA UK cache on support groups so I sincerely hope that you find this useful:

    fmauk.org/contactsmenu/supp...

    The only thing I would add is if anyone is thinking of meeting up with somebody off the internet that they do not know then please show some caution. Always meet and stay in a public place, please stay safe.

    I want to sincerely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you

    Ken

  • Thanks Ken, your a Gent... have a good day.

  • :)

  • Welcome Mick as my two Fibro friends have already said you will find help from everyone.

    Blood tests - X-rays etc will not show Fibro - however - they can give docs info as to what you may have - say arthritis etc.

    It is very difficult to diagnose Fibro unfortunately but one day they may find some sort of test to define and hopefully in that process they may find a better way to treat it and more so a cure - until then we have to just get on with it.

    I think you need to go back to doc to get a different tab/tabs to help you with the pain you are suffering as there are more choices than what you have been given and something that will suit you - I am sure you will find other Fibro sufferers will tell you that they had to try different tabs before they found one that suited them.

    Take care wish you best of luck 🤗

  • Hi Mick, welcome to the group. It is a friendly helpful place. It is good to see another man here. I know men get fibro but not many ask for help.

    Im 51 also, I dont work due to fibro and depression. I stopped working over a year ago. I was diagnosed with fibro about 18 months ago. As you say fibro seems to stop me doing many things. I dont drive anymore too as I cant concentrate. I dont play golf anymore, I dont have the energy. I used to play regularly hence the name.

    I dont really have any advice other than try meds again, im on amitryptiline which seems to help. Im in a support group who meet locally, they are very helpful.

    It is good to meet you. Keep in touch.

    David

  • Thanks David, sounds like you and me have developed this at the same time in our lives. im in exactly the same senario as you, in that i cant work also..... that is enough to get you depressed. Without all the pain and sleepless nights.... Still driving at moment though. I found my meds made me a bit curfuddled so stopped taking them. Pain is bad but i am managing. My medication didnt make much difference to the pain anyway. did help with sleep though. thanks again for your reply.... all the best to you.

  • Hi Mick, Welcome! Sorry you are having a hard time of it. It is a horrible condition and takes over your life at times but I do hope you can get some other medication to help ease your symptoms. I take cocodamol and pregabalin that ease it but everyone is different ,and during flare-ups my hot water bottle is my best friend, It is such a weird condition. I thought it was all due to the menopause would you believe an thought I was going off my head with the electric shock pains in my knees and pains everywhere else till finally and I took myself to the GP years later and she diagnosed Fibromyalgia and M.E. straight away. The fatigue is hard to cope with also at times. I dont know if this may help but a fellow sufferer was told if you have fibro stay off grains! It greatly helped her. I am trying gluten free products just now and so far so good, though I am just getting over a flare-up but anything is worth a try. It is good to have so many nice people who understand exactly what you are going through and I am fairly new also. It is known as "the invisible enemy". People think because you look well they just dont understand the pain and fatigue you are suffering. Good luck and hopefully your GP will be able to help. x

  • Thank you so much for your reply, tried juicing after reading several articles about it ........however just left big hole in my wallet. No difference to my symptoms at all. Thanks for the advice about grains, may give that a try.

  • Think you have got to stick to having no grains Mick for some time as I dont think it will be a quick fix, though who knows, you may find a difference fairly soon. Since I have started the Gluten free and have tried cut down on the dairy and sugar a little also, as well as losing a few pounds (though wasn't overly heavy) I dont feel I am missing out on anything as you can get gluten free choclate biscuits etc., if you wish, though the gluten free products are a bit more expensive. I started taking IBS(Irritable bowel syndrome) which many fibro sufferers have ,though until recently I had no problems. It was my daughter in law who advised the gluten free and I've had 2 weeks ok so far. I am reading a book "Heal your gut" and I have read articles on "Leaky Gut" (sorry doesn't sound very nice lol) online and a lot of it makes real sense. The woman who got rid of her fibro and off her medication follows the Paleo diet but I'm sticking with the gluten free just now. I hope if I am out for a meal at any time that I will be able to eat normally and then go back to the gluten free the following day. I subscribe to the "UK fibromyalgia" magazine. I get it posted monthly or you can read it online. It has interesting articles in it as well, and along with the advice from our "Fibro Family" here I hope your symptoms become bearable. It does get me down like so many who feel the same, and with being so active previously I find it so hard to pace myself and tend to overdo things on a good day, then it all flares up and I have to take to my bed, so tread carefully. Let me know how you get on, sorry for such a lengthy email. Good luck !!! x

  • Hi Mick, I have fybro and a lot of other autoimmune conditions so my fybro sort of gets left out when it comes to handing out remedies and advice for the pain etc............... but i have found recently (after being very ill and only being able to eat soups) that red and green peppers seem make the pain worse so they are now off the menu here lol

    also I just started to have lemon and honey in water (just a few sips during the morning each day) and started taking 200mg tramadol at night, 100mg in the morning ............. my pain is a lot less aggressive and I find I am coping with it better now :)

    just wanted to share that with you so you can see that trying different things might not work for you but others will and eventually you will find something to help you with the pain. Also I try not to focus on the pain a this seems to make it unmanageable too, big gently hugs to you and hope you find something that eases it soon xxx

  • Thank you so much for the reply, its great to know that so many people care enough to offer their advice and their ear. Thank you again. xxx

  • Welcome Mick....As you can see by the others replies this is a good place to find out information, support and generally get to know more about Fibro from those who know!! I do think you should see your GP re. medication as there are several you could try.....Have you tried typing into your search engine for Fibro groups in your area...I am sure you will find one and hope you can join and find some relief very soon......Hug x

  • Thank you, will do, Have a good day xxx

  • Hi Mick welcome to the group. We all know how debilitating and isolated Fibro can make you feel, and not all GPs have the knowledge or skills to help. The symptoms (and response to treatment) varies from one person to another. Ask your GP to refer you to a Rheumatologist, who should be able to offer some options. However the wait can be long and (literally) painful, I myself paid £200 for a private consultation with a rheumatologist as I was so desperate for something to help - its the best £200 I ever spent. I am now in mainstream NHS Rheumatology with a Fibromyalgia diagnosis and started on Methotrexate, which (fingers crossed) I have tolerated well without any of the alarming arm-length list of side-effects. I still have bad days but just hanging on at work and occasionally have energy left to socialise.

  • Thank you for your reply, not working and no benefits so £200 out of the question. i was on pregabalin but i put on 2 stone in 6 months, so decided to get off that. Glad i did, it made my brain fog much worse... felt like a zombie...lol. Thanks again.

  • Hi M1keym again, I took pregabalin, felt great at first, relaxed me enough to cope with pain at first, then after a week or so relaxed me so much could not get out of bed, had to come of them pretty quick. Has your doc mentioned pain clinic. Did not help me much, but worth giving it a try. If you need to sort out finance regarding your illness your local citizen advice are really good. I have just started going to a local fibro me group, found it on the net. xx Just for the record I live near London.

  • Hi mick sorry to hear of you not coping very well with fibro. I too have fibromyalgia. I found a forum on facebook fibromyalgia uk its full of information. Maybe you should try and join the forum its very helpful and they do arrange meetings and things like that gir pple like us. X

    Hope it helped

    Ruth

  • Thank you Ruth. xxx

  • Hi Mick and welcome to our friendly forum, you'll find lots of information and support on here, we're all in the same boat more or less so know what you are going through . Have you seen a rheumatologist at all? I went privately as the waiting list was so long, good luck and take care

  • Thamk you very much for the advice. will try to see a Rheumatologist. But unsure how they might help. Thanks for the advice.....and have a good day.

  • Well a rheumatologist is a specialist in this sort of thing so should know more about how to treat it and make sure it is fibromyalgia and not something else, a Dr usually refers a patient to a rheumatologist for confirmation, good luck

  • it is rheumatologist who can give you the diagnosis in writing, and also send you for a body scan to rule out other things

  • Seen so many different Doctors, i actually forgot. I have seen a Rheumatologist, He sent me for an MRI in Doncaster, however i had to get out of machine after only around a minute. .......Did not know i was claustraphobic, began to panic. I went back to see Rheumatologist .....he was not happy with me, i realised i needed to have it, but it absolutely terrified me. I asked to be sent to leeds, where they have an upright scanner. Managed to go through with it there. needless to say they found nothing. So all the Rheumatologist did was rule out anything else.

  • That's all part of the process, have you had your thyroid checked.? I think and this is just me thinking.... Antidepressants can help sometimes, only thing is you have to take them for about six weeks before they work, and in that time it can feel quite unpleasant. They are not so bad as taking meds to help you sleep. xx

  • Hi mick , and welcome to our fibromyalgia family . In the main most Drs don't really understand and I have had it since I was a little girl and they didn't know anything about it then . What you need to do is get your dr to send you to a pain clinic , you will learn to pace yourself and a few other things . Hope you can find s group .

  • Thank you for the advice. xxx

  • Your welcome you will get lots of help on here and it's not all misery we are usually quite up as a group but it's ok when you don't feel up and are struggling , well then we can come along side you . Xx

  • Hi Mick. I was told by my GP many years ago to 'learn to live with it ', which is basically what I've done. I take triple strength co-codamol (Zapain), which takes the edge off, but in my opinion, there is nothing out there that takes all the pain away. So my friend, in my doctor's words, learn to live with it! Take care. Maggy

  • Yeah, thats about right Maggy. thank you for your blunt but accurate reply.... have a good day. xxx

  • Hi

    Welcome to this site of the loving people around, who know what you are all going through, any thing you want to know there are some very clever people here just ask, if you only want to let off steam or ask for help.

    I used to feel really lonely no one knowing what it is like having this but now I feel like am in an elite club only the best are welcome so keep on smiling a laugh a day is better then a pill.

  • Mick, you need to get your GP on board. Before I got my g.p and subsequently consultant sorted out, I cried in pain, frustration and fear. Once I started fighting with Med's I can't tell you the difference, yes I still suffer with stiffness and pain but at least now there is some relief. I wish you well and pain free,

  • Thanks Ronnie, been to doctors many times, usually its a different one every time i go. So i have to go through everything, time and time again, explaining my condition. They all seem to have the same attitude, i.e errrrr i dunno. lets try some more tablets, not any thought to trying to get to the root cause of this. we will never have any chance of getting better if they dont at least try ! Its just yeah you have fibro, what meds do you want to try for sleep/pain etc. Are they not supposed to at least attempt to fix us. Rant over ! lol again thanks for your thoughts....much appreciated.

  • I do know where your coming from, I have personally been looking into Tia chi they do say it helps a lot with different aspects of fibro, you know mind, body and soul. When I try it I'll probably need morphine lolz but I'm willing to try anything at this point .

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