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Help!

Posted , 15 users are following.

marc14933
marc14933

I really need some help and advice. I have been suffering with fibro for about 4 months although I suspect its for years.

I've got the most horrific. Despicable, horrendous pain I cant even begin to describe.

My thigh muscles, knees, ankles, calfs, behind my kneck and around my shoulders, down my back and even in the buttocks, my elbow joints and lower and upper arms.

I am shattered at the slightest exertion,

My Dr has said It looks like fibro but no poper diagnoses.

Im always cold and shivery and the cold weather makes it even more unbearable.

I am on the highest dose of paracetemol, ibuprofen, naproxen, nefopam and pregabalin daily but its not doing much.

Iv suggested tramadol, oxycodone or tapentadol to my Dr but he just refused and said I'm on enough.

Im really at my wits end. I genuinely am starting to think I might just end it because I REFUSE to cope with pain, cant do it, just cant.

Got the pain clinic end of next month but don't think I can last that long!

1 like, 29 replies

29 Replies

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  • nickitza
    nickitza marc14933

    Posted

    Marc,

    I am so sorry to hear that your pain has gotten to such a degree that you feel hopeless. I hope you take everyone's suggestions here very, very seriously to find a new GP. Obviously the one you have now is not listening to your needs. They are not all like that; please find one that will listen to you.

    It is incredibly important to understand that fibromyalgia makes us all very susceptible to anxiety and depression. When you are dealing with pain all day, it does things to your brain that are not normal or healthy. I would seriously consider looking into a therapist of some kind who you can talk to about things like the pain, your exhaustion and people not listening to you about how destructive fibromyalgia can be. When we feel like we don't have someone to really, really talk to and someone who is really, truly listening to us, it is all too easy to internalize the pain and collapse under the pressure. People can give you a million suggestions, but none of them are going to help if you are too mentally and emotionally exhausted to actually see them through. Take care of yourself.

    You are not alone. There are people out there who want to help you. Please, please try to find them. I know with the pain and exhaustion that it sounds like too much effort, but there is light at the end of the tunnel if you can find the people who care.

    Good luck.

  • cristian46692
    cristian46692 marc14933

    Posted

    HI Marc14933  I really understand your message i been in so much pain for more than 4 months and I Seen so many doctors  and have done some may test " Ultrasound ,3 MRI ,2 X-rays, EMG and not mention all the medication that I been prescribed I was taking 3 tramadol at once and it didn't help then 2 percocet before bed ups Forgot to mention the pain it was in my elbow down ,wrist and especially in my hand after scene 7 DR orthopedic hand specialist,rheumatologist,pain management Neurologist and none of knew what I Have and also the pain it was crazy 24/7 especially at night even the bed sheet bothers me to sleep i didn't know how to put my hand to sleep because of the pain,finally I Went to another orthopedic hand specialist and he told that there was something wrong in my elbow that it shooting pain to my hand and no test is going to show it ,so he told me to think about surgery ,but there no guarantee that to a better solution .so after so much time with this crazy pain because actually i was going crazy I had surgery yesterday I dont know it ,but it feel a litle better .look something that really help me with the pain when i dind have no medication it was marijuana I dont smoke but the pain it was so bad that I was trying anything and it really help to to go sleep at list ,I smoke some before to go to bed and during the day I just took the pain ,the only thing that I can tell you that there have been the worst 3,4 months of my life
    • tiswas24537
      tiswas24537 cristian46692

      Posted

      well i hope this has sorted your problem .

      iv just ordered some medical grade cannibus oil and organic hemp oil from a shop in rotterdam ,so fingers crossed .

      i wish i could get the concentrated rik stein stuff . but thats illegal . 

      hope all goes well in your recovery , magneisum helps .and arnica gel for any bruising .

  • Flowerlady
    Flowerlady marc14933

    Posted

    Hi Marc..Know exactly what you are going through. I have been on numerous meds, they seem to work for a while then do nothing. I have weaned myself off most of them and just now take Paracetamol and Oramorph, they just take the edge off. I too have a new doctor, and I  am going to see a pain specialist next month. No idea what they can do, but will wait and see. Regards Anne
  • moanersharon
    moanersharon marc14933

    Posted

    Your symptoms and nearly the same amount of time from diagnose I understand how you feel. Im always in pain in all the same areas as you, I have  a large family to look after but struggle to even get up in the morning.

    I am on a lot of new drugs as I WAS  MISSDIAGNOSED i

    I was treated for osteo arthritis for years . Ialso have coeliacs and lower back problems. I tried Tramadol but wasnt in control also ketamin. I feel guilty because I cant do things with my husband and children and like you struggle to cope with the pain and fatigue, you are not alone even if you feel you are.

     

  • LindaC49
    LindaC49 marc14933

    Posted

    Marc I'm sorry about the pain and depression you are suffering from your fibro. I know exactly how you feel. I have fibro and osteoarthritisis which causes a lot of pain, depression and fatigue. I'm on an opiod pain med, sleeping pill and antidepressant anxity med. There's a lot of controversy on opiods for fibro but without them I wouldn't have any quality of life. I've never had any side effects or gotten even close to high on them. One has to do what one has to do for pain relief. Unfortunately because of the abuse of narcotics by drug users the rest of us with true chronic pain don't get the pain relief we need. Until there is a cure for fibro and OA I will continue to take my narcotics and other meds (man made and natural) to improve my quality of life. I'm not worried about becoming addicted as there is no cure and the arthritisis continues to advance as I age(65). This condition is not like you've had a surgery to fix something and are on the mend with each day. The fibro ebbs and flows with many factors. Also, fibro is an invisible condition and because people can't see what's wrong with you they sometimes find it hard to understand  the pain we suffer. Many Drs. feel the same way about fibro. It's important to find a Dr. you are comfortable with and takes your pain seriously. Good luck and hang in there you are not alone.
  • hope4cure
    hope4cure marc14933

    Posted

    The best suggestion I can give you is to find a good rheumy!  They specialize in Fibro and can help u a great deal. 
  • jackie10858
    jackie10858 marc14933

    Posted

    Hi Marc so sorry to hear of your suffering, it doesn't help when ones put things like "4 months try 10 yrs" especially to someone who is at their wits end with the pain, we have all been there its true, it is really hard at first as you are coming to terms with a new illness and one that is very painful, it may sound daft but in time your body adjusts & you learn to adapt, I was prescribed pain blockers, the only painkillers I can have is paracetomol due to severe stomach problems, so I can't really advice on best pain killers, please hang in there, push for the right support you deserve & talk to others, I really hope things improve for you very soon
    • tiswas24537
      tiswas24537 jackie10858

      Posted

      all i was saying if your loosing it after 4 months how are you going to be after 10yrs , what most people cant seem to get in there heads is that stress makes it worse , so the more you stress the more you suffer ,

      some times you just have to get tough or go under .sorry if me getting tough offends but i am not sorry i do not let this condition rule me as so many dont

      , know one came to me telling me what to do i went for years like so many others thinking i was crazy going out of my mind with pain and symptoms before i found out what was wrong with me 

      then the doctor and specialist confirmed it . pain is in the mind i dont mean its not real but its wrong signals picked form the nervous system when the nervous system is stressed it sends more . so put your mind set right you can go a long way in controling your pain .

      destressing is one of the best things you can do .but it takes time and effort .pills alone wont sort it .

    • jackie10858
      jackie10858 tiswas24537

      Posted

      Hi, I hear what your saying but disagree in part, if someone's suicidal it does not help to make the comment you made, how would you feel if it was the very thing that drove them to do it, would that bother you, what might work for you may not necessarily work for another, it can affect people in different ways, not everything is black & white, I'm saying no more on it
    • tiswas24537
      tiswas24537 jackie10858

      Posted

      yes get what your saying weve all had times when we think whats the point of going on every time iv tried something new and it hasnt worked iv been devasted cried till it hurt , but to much symphtahy dosent work either ,

      even the samertians stay away from to much of it. because you need encourgment  and sometimes. and  i know because iv needed it at times  a good hard kick up the back side , to get on and do something positive about whats going on .

      . maybe i am just of a generation that didnt think there was a magic pill for everything , we just got on with stuff like previous generations my gran had R/A her fingers and and toes were or twisted, all she every used was winter green oinment .and beechams powders.

      yet i never knew her in bed past 9 am she shopped everyday with a leather shopping bag , she hand washed everything and her sheets were done in a copper.

      and were cotton, not poly cotton whiched she heaved out and put through a mangle , so when i am having a bad day yes i do have many ,i just count my blessings . instead of feeling sorry for myself . 

      and if more people did they would be a lot healtheir and happier sometimes there isent much that can be done and you just have to cope the best you  can . to much sympathy is not support .

       

    • sukest
      sukest tiswas24537

      Posted

      My mam used to tell me that 'there is always someone worse off than yourself and you never have far to look', which throughout my life I have found out to be on the whole true, however, she also taught me understanding and not to be dogmatic!  My nan lived with us and I can remember as a 'very' small child watching her in the back yard doing the washing exactly as you have described, however, when years later my mam got her twin tub I would have enjoyed watching anyone trying to take it off her! She had experience of both ways to do the washing and would certainly pick the 'new way'! You might be someone who reacts to being told to pull themselves together positively, but in my experience as a nurse few people are, and in fact it causes even more stress. Medical research, thankfully has come a long way from 'winter green' ointment and Beecham powders and I for one am very grateful. As for sympathy it's something that we all need at sometime trying to live with fibromyalgia but support we need that all of the time! S 
    • tiswas24537
      tiswas24537 sukest

      Posted

      your spot on i think we need understanding more then sympathy  , iv never found anyone whos not a sufferer friend ,family ,or medical profession to show much sympathy  and you get very precious understanding

      ,from my experince  so i suppose i just learnt to put up and shut up . 

      i am having a bad time at the moment lost my appetite feel really tired bordering on feeling exhusted but not quite there yet .

      my nan wouldnt use a washer my granddad offered to buy her one but she just used to say water and electirc dont mix . but she thought nothing of plugging  in an iron to the light baulb socket .

      suppose i am a bit like her  .in some ways not quite as brave , she had all her teeth out on top in one go ,then went back a fortnight later to get the bottom ones out . couldnt even imagine what that was like , and i am glad that some things have moved on .

  • sukest
    sukest marc14933

    Posted

    Hi sorry for late reply but I've just seen your post. Firstly I'm not taking lightly your threat I've been there and I could return at anytime who knows? Secondly your present doctor doesn't seem to be of the best help for you. So you need a plan!

    Go to another doctor explain that your present meds aren't working and suggest that you come off one of them and replace it with another maybe more stronger drug.

    Ask for a referral to a rheumatologist that's how I and I assume many others get diagnosed with fibromyalgia.

    When you go to your pain group ask the person running it for a 1 to 1 consultation, if they need a referral ask for one, the fact that you've been referred to a pain clinic in the first place is a good step, so you shouldn't have a problem getting your doctor to go to the next step necessary.

    Your not on your own even if you feel just that. However, you desperately need help with your pain control and frankly that's what doctors are for so gather some confidence and go and tell yours just that - I did! Good luck, huge hugs. S xx

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