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Where can I find help???

Posted , 8 users are following.

emma83518
emma83518

Hello, I am undiagnosed as yet (after 6 months of various tests...) and the symptoms I have seem to match with Chronic Fatigue Syndrome or Fibromyalgia. I picked up an infection 7 months ago while traveling through Asia and although most of the symptoms have gone, I am left with this overwhelming fatigue and constant aches in my legs.

I'm finding it really frustrating as the doctor has sent me away to try some antidepressants (something to do with helping the nerve endings?), but I tried one of those and the next day I felt even worse. I think I could cope with the aches in my legs if I could improve my energy levels, can anyone recommend a way to do this please????

I have tried a number of supplements including B Vitamins, D-Ribose, CoEnzyme Q10, Multivitamins and Iron, Vitamin C and Zinc, Evening Primrose, 5 HTP, Spirulina and Maca. I've also tried swimming and sort walks, but this is a real struggle. I used to be so active, and I don't know how I can go from that to struggling with a flight of stairs.

If anyone can please offer any advice on supplements, or anywhere I could find help that would be fantastic, thank you.

 

1 like, 37 replies

37 Replies

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  • sally_14743
    sally_14743 emma83518

    Posted

    It's been around for a while now first outbreak in the royal free hospital in london in 1955 with staff all catching flu and then a high percentage getting CFS because they worked with flu or went back to work too soon. High achievers  pressuring themselves to not give into illness . You will recover but the key is to give into it. That sounds like defeat but your body is broken ... If only they knew how? And as they have no cure yet your body has to heal ... So giving your body the opportunity to heal taking lots of vitamins and herbs etc helps but resting is vital. When you have good days find a level where you can exercise example walk to the end of your road and back ... Not too much .. If you overdo it .it hits 48 hours later... Don't get frustrated with it and think I feel good today I will clean the house go shopping and do the garden I know I will pay for it with a week of fatigue but at least I will do something... That's crashing and you don't recover. Keep a diary and Mark your good days and bad at the end of the month count how many good days you have you will see over the months it improve... Then increase your exercise on good days monitoring it to make sure you don't relapse with it .... We live in Cornwall and truro hospital has a specialist in m.e. Google your hospitals to see where a specialist is. Don't waste money on private clinics ... Remember recovery is very high percentage ... Remember GPs are not great help because they can't cure you or give u a pill that doesn't mean you won't recover and loads of people have had it and recovered but they don't talk about it. Why because it's a black horrible nightmare and it haunts them. Once recovered they move on enjoy life and try and forget it. Who blames them ... Thanks for the kind words I love my husband and I know he is suffering he is a perfectionist hard worker self motivated person and not lazy .... He I know will recover now he has given in and accepted you can't ignore it and fight it you've got to accept it and work with it .... Hope you pick up quickly .. One word the specialist did say don't ignore strange symptoms you can have other problems and CFS ...
    • emma83518
      emma83518 sally_14743

      Posted

      Thanks again Sally, you really are bringing me some hope. I think I do try and fight it, so on a good day I will push myself - but then crash. I find also I can be positive for the most part, but then hit with a few bad days and it seems hopeless. It's definitely a vicious circle, and perhaps that is because I am trying to fight it rather than work with it. You've been a great help, thank you so much.

       

  • david59662
    david59662 emma83518

    Posted

    I've just found out about a promising therapy for ME/CFS 'The Perrin technique.'

    Osteopathic treatment.

  • dawn97
    dawn97 emma83518

    Posted

    Hello Emma first may I say how sorry I am to hear the  sound of desperation in your words ! It feels as if I'm reading my words from years ago , it just proves how many of us are out there feeling isolated & afraid of  losing  who we are / where !! 

    Please rest asure after many drs appointments you will get to a good place , it isn't a quick fix , I was first diagnosed with fibro 14 yrs ago & now it's/f/s also !?

    im not sure if I have one or both but I do know how you feel being told by family to pull yourself together or by drs that your depressed yet the feeling that your left high & dry  seems to be how we all feel ! I to have given up work I just could do it anymore I am exausted all the time ! It's my 52 nd birthday tomorrow & I'm dreading having to answer the phone & door !! It's too much to even want to celebrate !?!? I sound so ungrateful but I can't help it ! It's been too long trying to be NORMAL that I've worn myself out ! Sorry I don't mean to scare you , I just want you to know the things you are feeling Are NORMAL if you have fibromyalgia & or c/f/s !  My advise is keep knocking at your drs doors you will get the right help eventually !

    good luck take care dawn xx

    • emma83518
      emma83518 dawn97

      Posted

      Thank you for your advice Dawn, it is a comfort that there are people out there who understand and that there is some hope! I understand there are different degrees of how this can affect people, I hope you've had some improvements over the years - I think I was hoping for a quick fix, but you're right, there isn't one.

      I hope you do get to enjoy some of your birthday, you don't sound ungrateful - it is really exhausting pretending everything is OK. Thank you again, take care and happy birthday!

       

  • sally_14743
    sally_14743 emma83518

    Posted

    Being positive is tough. But I know so many people who have recovered. This is my own observation as I haven't thank goodness suffered the evil condition. You are in the wrong place and the wrong time with the wrong conditions and are already struggling. Most people with CFS have had some big stress , bereavement , abuse ,dog bite attack, divorced parents, sibling death  etc etc in their childhood or teens. They have soldiered on determined not to be affected . Then they are in the wrong place maybe unknown to them they are in contact with pesticides or chemicals ..I.e. A decorator with paint fumes a carpenter with wood varnish a photo copy engineer with inks ,a cleaner with industrial cleaner a farmer with sheep dip so a person whose body has been under prolonged stress maybe for decades then pollutants then a virus even gastric flu is in the m.e. Virus family ..flu etc... And you don't recover ? Why .. I wish I knew .. But I have looked into this a lot .. Similarities gulf war syndrome ...sheep dip syndrome .. All chemicals stress and then fatigue... Very interesting ... And why don't the medical profession get to the bottom of it ? Because the majority recover ... And I think CFS is an umbrella for a multitude of variants ... So take heart ... 

    My hubby wrote out on paper in detail stressful things that he had had happen from childhood up to now . Incident at a time it was emotional , then destroyed the paper he felt a lot better.. He was very surprised he did it a bit under duress. And remember the body replaces every cell every 7 years . Wonder if that's why people recover ? I feel for you you are getting your head round it but I know a lot of people who totally rested for 6 months to a year and others who took 7 years ...and the people that love you know how awful it is and embrace your good days and sympathise on your bad ... You will be giving someone advice in the future of how you recovered Mark my words ...

    • emma83518
      emma83518 sally_14743

      Posted

      All the reading that I have done seems to indicate there is no recovery as such, so to hear that some people do recover is brilliant news. It's really interesting about the body replacing its cells every 7 years, and about the contact with pesticides and chemicals. I guess there really are so many factors out there that can trigger such an illness, and it might be impossible to pinpoint what actually triggers it as maybe it's a combination of many. If I can recover from this I would happily give advice! You've been absolutely wonderful Sally!

       

    • david59662
      david59662 emma83518

      Posted

      I think like many health problems it is chronic stress that causes it.
  • jacquie14742
    jacquie14742 emma83518

    Posted

    This has inspired me also  -- i too have CFS and possible fibro...im 35 with two small kids...I have tried all the supplements you mentioned and i am 17 months into this now...im on list to get help at M.E clinic but this has taken 6 months so far...will have to chase again!

    Sally - this is a positive story and i too didnt realise of peoples recovery rates...i do know personally two people who have recovered from M.E but less so from Fibromyalgia...

    Keep us all going and posted and together we can get through this smile

    • emma83518
      emma83518 jacquie14742

      Posted

      All the advice has been so helpful, I'm researching into things that I don't think I would have found on my own! You're doing amazing Jacquie, I can't imagine how difficult it would be having all these symptoms and looking after 2 small children!

       

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