Fibromyalgia Action UK
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Chronic Fatigue blighting my life!

Last few months have got progressively worse with my fibro. My pain is spreading and so intense. I am so fatigued and feel permanently unwell. Just wondering if anyone else has gone through this ( well I know we all suffer greatly ) and can give me any tips on how to get through each day. I feel as if I’m not living any more , just getting through each day. Thank you so much for listening to my moans when I know that you are all suffering too. I hope you are all having as good a day/ evening as possible. Audrey x

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Hi I have some really bad days and some ok but at the moment it’s bad. My legs right shoulder and neck are the worst recently. Legs are constantly aching and swollen.

I have widespread fibromyalgia and osteoarthritis in my hips and back. Recently I had X-rays done on my right shoulder and neck and have it there too, disc c6 & c7 are damaged from it.

I am 47 and had been running to my gp from I was 30 about the pains. I was diagnosed with it in January 2013.

In the mornings I can’t lift my arms they are dead, there is a constant ache and numbness in my biceps constantly.

My body feels like I did 5 hr work out.

What medication are you on?

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Oh you poor girl! What a time you have had/ are having! I don’t know why some of us have to suffer such degrees of pain. Do you also have bad fatigue? I hope not because it sounds as if you’ve got enough with the pain that you are going through. I am so fatigued and yet find it difficult to rest because if the pain. I’m on Lyrica ( though I don’t think it does much good ). I’m not good with pain meds at all. I take about 37mg tramadol in the evening although I am trying to cut this low dose down. I’m seriously considering trying CBD oil. Are you in any meds? I am so sorry that you are having such a difficult time . I really wouldn’t wish this on anyone. Thank you for replying and I hope that you get a bit of respite soon. Xx

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I know exactly how you feel. I haven't had a diagnosis as such, first time I saw rheumatologist, I was told lupus. Second time I saw a different rheumatologist and was told fibromialgia, I don't know if it is one or the other or both. Not on any medication since I was advised to come off hydroxy due to making me feel worse. I am in a right state and my antidepressant has been upped from 150mg to 225mg per day plus 150mg twice a day of lamotrigine, mood stabiliser. My e,s.a., enhanced rate was stopped dead and now I am taking d.w.p. To court. Everything has got me down big time. I am on no meds but got a physio appointment tomorrow. I know n.h.s. Are in a mess but my appointment with 2nd Rheumy was 13th December and still no definite diagnosis or meds. Tearing my hair out and I sympathise with everyone on here who is suffering.m

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I know how frustrating it is not to get a diagnoses. I haven’t had one either. My GP originally told me it was just chronic pain. More recently when I asked my pain consultant if I have fibro she said well the chronic fatigue sounds more debilitating! I hadn’t even thought of chronic fatigue up till then. Then when I went to pain management and told them what pain consultant had said , she said well pain and fatigue go hand in hand. I’m no further forward! I am so sorry that you are feeling so down just now. I don’t blame you. I feel the same and yet somehow we have to keep positive. I think speaking to others on this forum helps a bit. Thank you for replying to me text and I hope the Physio helps. Xx

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Mandypandy1969. Oh gosh, big hugs winging there way to you. Completely understand, I was referred to muskoskelatel specialist as suspected fibro, he thought something else going on, had specific bloods done, ANA being one of them, came back high positive for Lupus. Did they do bloods when you went? I am under Rheumatologist now, appointment came through quick, saw him last week!

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I find the fatigue worse than the pain. For pain I can take painkillers, apply heat but for the fatigue there's nothing.

I only have the occasional day when it doesn't wash over me and just wipe me out. I do so little to what I used to.

I tried Ribose which is supposed to help fatigue but it did nothing.

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That is exactly how I am feeling. I also tried Ribose but it made me really nauseous.

I don’t know what we can do to overcome this fatigue. I’m wondering about asking my GP to refer me to a chronic fatigue clinic. I think they do exist !

I hope that you find some way of dealing with your fatigue. X

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I have CFS and went to the CFS clinic in Liverpool. It’s run by therapists who teach you to pace yourself. Not a cure but helps mentally.

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Thank you for text. Yes I thought CFS clinic might help me to feel less isolated with this condition. It’s so frustrating to be so debilitated by this condition. I hope that you get some good days. X

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Yes it will help to feel less isolated. When I first got diagnosed in around 2009 I had not really heard too much about it. Thought it was sleeping all the time whereas I had pain and nausea and all kinds of symptoms so when I went to the clinic it helped a lot. The only criticism I had was it was on a one to one basis whereas I though talking to other sufferers in a group would be better. You see a therapist every other week for about 6 months and you talk things through. Once you have done the course you are signed off and that’s all the treatment the NHS give which is a shame because over the last few years I could have done with a referral but my G P says I have had the treatment allowed by NICE and that’s that.

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Thanks for your detailed reply. I am really sorry that you are suffering so much from CFS. I have these symptoms that you had - sleeping too much, in a lot of pain and totally disinterested in food. I feel sorry for my husband because eating is a bit of a problem and he gets such bland foods! I like you, feel quite isolated with this condition. It’s so difficult for others to understand. Apart from family they only see us on our better days. I really apprentices sharing your experiences with me and I hope that you get a bit of relief soon. Xx

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Ps - Have you been to a pain management clinic? They have weekly group meetings which might suit you.

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I can cope with the pain it’s the terriblefatiguethat brings me down. I also have dizziness which doesn’thelp matters. My husband does the food shopping and asks me every day what we are eating that evening. I can’t bear to think about food most days. Causesa lot of tension in the household. I get odd days when I don’t feel too bad and then overdothings trying to catch up on housework and then I’m back to squareone. It’s very hard to understand. Just glad I don’t have to go to work anymore.

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Your text could be written by me! It’s definitely the fatigue that gets me down and thinking about food is an issue. My GP has given me drinks to help my calorie intake and I am really trying to eat more as I feel I will have no resistance if I get a virus. It’s hard and I worry about all the things that I don’t manage to do. Think we should both try not to overdo it on better days. Easier said than done! I’m thinking about you and hope you get better days soon. X

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Let us know if you get a referral for the clinic.

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I will do, thanks.

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Thinking about what to have for dinner is bad enough, cooking it is even worse! Tend to batch cook and freeze for easy eats, when flat out with fatigue and brain fog xx

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That sounds a good idea. Thanks. Xx

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