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CFS? Or MS? Positive Advice Please :)

Posted , 7 users are following.

CherylGH
CherylGH

Hi All,

So I wanted to ask for advice on those who suffer from CFS/M.E/Fibromyalgia.

I have recently been referred to the CFS clinic as I have been suffering from a whole host of different symptoms including chronic fatigue, sore throat, aching neck and back, dizziness, ataxia, problems with speech, blurred vision, tremor, weakness and the list just goes on and on . I am a 32 year old female and have been unwell most of my life on and off, but recently after a very bad case of long term depression for 2 years ( which I have now come out of) has now left me feeling so unwell from all of these other symptoms.

I wanted to start a family but now can not see anyway of doing this feeling as I do now, so I am desperate for any advice on how to get better from this disorder. Please can we only comment positive stories to help as not sure I can take anymore negativity at the moment. Thanks

0 likes, 22 replies

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  • CherylGH
    CherylGH

    Posted

    sorry error above should say ME not MS ( not sure how to edit)

  • Tutu123
    Tutu123 CherylGH

    Posted

    Sorry to hear your struggles 😦

    Although it is rare for people to recover from M.E. there is info out there on things you can do to make life easier and the symptoms less severe. Diet is one - a good clean diet with as little sugar, alcohol and processed foods as possible is always a good start. There are various private clinics who test everything under the sun that could be contributing to your chronic fatigue such as gut parisites, hormone imbalances, heavy metal toxicity etc. But these tend to come with a hefty price tag.

    Some people find complimentary therapies help ease (but rarely cure) symptoms such as reiki, acupuncture, reflexology, massage, hypnotherapy.

    I know M.E. is not a psychological illness but psychological factors such as stress anxiety and childhood trauma can really make the symptoms worse (but you say mentally you feel better?). A good therapist can help with these issues.

    Also on a positive note, a number of people have said that getting pregnant actually improved their symptoms(who would have thought?!) and there is not evidence to suggest m.e. Would cause issues with fertility (but I guess you have to make a tough choice as to whether you feel you could cope with a child).

    Good luck with everything. Sorry sometimes when I write my ramblings they make no sense (Brain fog!) but hopefully might be of some help

    • CherylGH
      CherylGH Tutu123

      Posted

      Thank you for your very informative reply. Do you know if there are any vitamins/ supplements which help ?

      I have recently tried acupuncture but have had to stop as this is quite pricey and I am unable to work at the moment.

      I find it hard to keep on top of the wide array of symptoms and was wondering what others take or do to help. you mention diet, is there any particular diet you know which helps or is it just clean eating/living ?

      thanks

    • Tutu123
      Tutu123 CherylGH

      Posted

      I personally find vitamins and supplements do absolutely nothing for me. A lot of m. E. Sufferers say b12 supplementation sometimes helps though.

      I agree the complimentary therapies are so expensive to have on a regular basis particularly if you don't have a huge income. Although I'm not sure where you are living but they have started offering acupuncture on the NHS.

      With regards to diet some people find they are sensitive to certain foods so Google elimination diet - sometimes you have to do a cleanse then gradually reintroduce foods and see how your symptoms are. A lot of people recommend paleo style diet. In short, protein, veg and fruit in large amounts, wholegrain carbs, leaving out processed foods. Basically cooking from scratch.

      I hope you are able to find some relief

    • charlie19
      charlie19 Tutu123

      Posted

      I am intrigued when you say it is rare for people to recover. Do you mean fully? I have had it now for 16 months, possibly longer. I started to recover after 7 months, I was able to do much more such as return to full time work after 10 months, although I am now in the midst of a horrible crash. In terms of recovery, if I did not have that as a goal I think any positivity I have would rapidly go.

    • david59056
      david59056 charlie19

      Posted

      Hi,

      You must have confused me with someone else. I am a good example of someone who recovered after ten years of ME. I went forward to succeed in anther successful international career. I know from personal experience how difficult it can be to stay positive especially at four in the morning but hang on in there. An interesting thing about ME sufferers I have found is how intelligent and tenacious they tend to be.

    • Tutu123
      Tutu123 charlie19

      Posted

      Wow recovery after seven months is rare I've never heard of someone suffering with m.e. For such a short period of time. I did mean it's rare for people to recover at all as there's little information about what causes the condition and currently no effective treatments. But I have heard of people spontaneously recovering (I pray one day that will be me one day but I doubt it)

    • charlie19
      charlie19 david59056

      Posted

      Sorry David I was replying to someone else on this thread. By the way its wonderful to hear of your recovery.

    • charlie19
      charlie19 Tutu123

      Posted

      My apologies if I sounded like I had recovered after 7 months. What I meant was I started to recover and after 10 months I was probably about 80% of where I was previously. I returned to work seven months ago and have managed....only just though. I am presently in a crash....which I hope upon hope it wont last long. Interestingly I had a very similar experience some 13 yrs ago. I had a bad 5 to 6 months although no where as bad as last yr. So I guess I have probably had this for much longer than 17months. In which case I more or less completely recovered for about 10yrs.....go figure. The doctors whilst content to diagnose chronic fatigue now have no answers for what has happened to me over a longer period.

    • CherylGH
      CherylGH Tutu123

      Posted

      Thanks for your reply, sorry I did not come back to you yesterday I was having a particularly bad day with pain and fatigue.

      I am interested in the elimination diet side of it, as from reading diet seems to help a lot off people. I have been looking at anti-inflammatory foods today also.

      I hope you find something that helps you soon, I really hope they discover what causes this awful disorder as it really does come with a multitude of problems!

      I am trying to stay positive but some days are much harder to than others and you end up falling into the feeling sorry for yourself mindset which never helps. I have an MRI tomorrow just to rule out any other nasties, feel a bit worried about it as I hate enclosed spaces lol

      Thanks again for your responses.

  • david59056
    david59056 CherylGH

    Posted

    To be honest from your description you do not appear to have ME at least as I new it for ten years. ME comes with constant unrelenting pain in your joints. So I think you could rule that out as a diagnosis. On the others I don't have the knowledge to offer an opinion. Is it possible you could give yourself a break in the sun for a couple of months with complete rest.

    • CherylGH
      CherylGH david59056

      Posted

      Hi David

      Thanks for your reply.

      I do have constant joint pain, I just did not list all my symptoms above as I could go on forever with my current ailments and dont want to bore everyone lol.

      what did you do to help relieve the pain and tiredness ?

      I currently feel like I have the flu as I'm aching all over ( however I do not have flu) i am trying to find ways to cope with the symptoms but new ones seem to pop up.

      Thanks

    • jan96753
      jan96753 david59056

      Posted

      hi David, I have been diagnosed with ME and I do not have constant joint pain at all , I do have fibromyalgia with it which causes pain all over more to do with nerve endings I have been told as I have numbness in my arm hands and face too. I think its not really up to us to say if someone has ME or not as it seems to be quite different for some .

    • Beverley_01
      Beverley_01 jan96753

      Posted

      Hi Jan,

      I agree. I don't get the gasping for air someone I knew with this got alot but, I get walking problems they didn't? Yet we shared many other symptoms.

      Beverley

  • david59056
    david59056 CherylGH

    Posted

    okay well i had it for ten years from my mid thirties when it was yuppie flue so a long time ago. The only thing that worked like magic was dry heat in Spain. I now live in the south of france. The ME has never returned. Although as I am now an old fart i suffer from arthites and a bad knee but i cannot complain i had anther exciting international career after i recovered from ME. So be positive. Good luck

    • CherylGH
      CherylGH david59056

      Posted

      so interesting that the sun seemed to help you, it will be amazing when they one day discover what causes it so that people will know what to do to help.

      so glad you managed to recover from it, that really gives me hope.

      sorry to hear about your arthritis though as I know others who suffer with the pain of that.

      Thanks again for reply and good luck to you too.

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