pain

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hi i feel like i,m being a pain but feel like i don,t know who to turn to at the moment . everyone on about with m.e how tired they feel i do get tired but to me i,m more in pain and now its in my bones i,ve never felt a pain like it before i felt like cutting my arms off cause i would do anything to get the pain to go away spend  in constent pain and crying . i know everyone different but i can,t help feeling doctors are misdignosing me . i still cant send a message to my legs to lift some times to my arms numbness is awful feeling and sickness that never goes away. don,t know what to do feel like i,m being a pain to my doctors i can,t even get down to see doctors anymore just don,t know what to do.

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13 Replies

  • Posted

    Hi Tracy, get the doctor to come to you. I have read amitriptyline can help with pain. I remember in the beginning of my CFS 14 months ago, i had pain as you describe as if the bones in my legs were being crushed.
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  • Posted

    Ohhh Tracy your not a pain.  We all vent on here and all have our own issues of pain too.  It's good to talk and you will feel better again.  Get a friend or take a taxi if you need to see a doctor.  You have to look after you, who comes first dear.  xo
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  • Posted

    Hi TRACEY , it's so easy to get confused about me it has so many symptoms that cross over with other illnesses for instance the pain you describe I've suffered with for years & I was diagnosed with fibromyalgia then as the years have passed the fatique got so much worse to the point I couldn't lift my little finger I was so exausted !! The drs now say I probably have had both fibro & cfs/me for years !?!?

    if you look up the symptoms of both & see if you  also can say you have  symptoms from both & tell your dr !!!

    im afraid the very nature of these illnesses are very differcult to pinpoint 

    many of us have symptoms from both but maybe not every symptom ?

    hope I've not confused you too much ???? Take care dawn x

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    • Posted

      hi dawn and i do feel like i got both but doctors just given pain relief which really don,t work just feel like i,m being left to get on with things and to get worst .
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  • Posted

    thanks all for replys i,m a worry see and know that don,t help things but get so confussed about my symptoms and feel like doctors dont understand last time i saw doctors i said to him i got 2 lumps come on my knees now and i had to ask him 3 times just for him to look at them.
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    • Posted

      hi tracy. i fully undertsand how you feel eventhough it may sound presumptious of me to say so. you do have my both my empathy & sympathy.

      when i was at my worst with pain & ME/CFS symptoms, i was confused and all over the place. it was horrible . the dismissive attitude of the Medics made me feel worse, even more self-doubting and feeling a burden on the system.

      however, a couple of things did eventually help. i kept going back to the Docs untill they HAD to listen. i wrote out my symptoms in ''letter'' form which went in my notes. i also got someone to come with me and that made a difference.

      in respect of the bone pain, you may well have vitamin D & vitamin B12 deficiencies. they tend to present when one has ME/CFS, especially if it's been with you for some time. bone pain is a key symptom of D def. these 2 condition can be diagnosed by blood tests and successfully treated. this will lessen the symptom load on the body and make life easier for you. also the symptoms of each overlap with the symptoms of fibromyalgia/ME/CFS.

      all good wishes to you.

      keep on keeping on. it does get easier with the appropriate interventions.

      Caitlin.

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  • Posted

    Hi TRACEY , I understand how you feel about getting confused & having no help from drs being left out on a limb not knowing what to do next , unfortunately it took many years for me to get medication right & acceptance of my illness took even longer !!

    my advice to you is book an appointment with a different gp , write everything that's wrong, hurting , worrying you down & tell him you need a full medication review & ask to be refered to a rhymatologist !! I know that is easier said then done & it will help to have a family member / friend with you who knows what you are going through so that when you get teary they can back you up ( I never visit dr / hospital without my husband because I start talking & forget half way through a sentence what the hell I'm on about hahaha !!)  you need help & they are paid to help you !!!!!

    i walked out of many drs surgery & cried but then I got tough it's not our fault we have these illnesses , !!!! I hope you get the help you need soon !!!!!good luck TRACY 

    dawn xxxxx

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    • Posted

      thanks dawn its the effort in me to fight doctors at the moment have,nt got it in me i do take my husband everywhere with me saying on about forgetting things i forgot where i lived the other day and at the start of my illness i forgot my brother had died and my best friend it was really bad i remeber now but thats how bad things got for me.
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  • Posted

    Hi Tracy , I know you will have to dig really deep to find the strength to get the right medication , untill you feel you are getting a Handel on your illness you won't be able to live your life & move forward !!

    when you find a sympathetic dr it will be like the world has lifted off your shoulders !! Trust me I've felt how you feel but I promise you things will get better , 

    its so unfair that we have to struggle like this there are millions of us & we should be taken serious !!!! Dawn xxx

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  • Posted

    Bone pain can be a symptom of vitamin D deficiency. Get it checked. My Dr put me on high dose Vit D for 3 months and then continued with a lower daily dose and it did help the pain in my legs. I still get pain but it doesn't feel like it's so in my bones now and easier to cope with.

    You should try a different dr if you are not being listened to and be more assertive. TELL your dr you WANT a referral to a CFS/ME specialist.

    Good luck, I hope you get the help you need.

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  • Posted

    Take 2000mg of vit c with zink, gradually increase the vit c from 500MG over a week to 2000mg i find that the Higer dose stops pain and if you have flu, if your not too bad take it back to 500mg, dont eat sugar coffee or anything thst causes inflamation, i blend ginger and. Unconcentrated pure apple juice for the sickness, you can heat it in a pan if you like. Hope theres some to help you, someone needs to prepare food for you when it gets this bad, its good to talk to someone too, i get a nurse in for a couple of days a weeks if i relapse. hope this is helpfull let me know if it does. X
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