1. Community
  2. Brain and nerves
  3. Chronic Fatigue Syndrome

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

Prev
  • dawn97
    dawn97 emma83518

    Posted

    Thank you for your birthday whishes Emma & its great to read others are inspired & helped by other peoples stories , it is the hardest thing to do carry on life with people who need & want you to be better , some days it's easier than others , I've never given up hope for things to get better but I have slowed my life down to a snails pace but it's a pace I can be happy with , just keep trying & you will get there , good luck x

     

    • emma83518
      emma83518 dawn97

      Posted

      Thank you Dawn, this really has helped me a lot. It's good to know there is hope for us all! smile

       

  • kattsqueen
    kattsqueen emma83518

    Posted

    Hi Emma.. I have a suggestion for you but it will require a change in diet but it is what worked for me and the results were astounding.. I changed my diet to low carb low sodium natural with plenty of high potassium foods and natural protein and fats such as salmon pork beef and fowl. Carby foods will often result in insulin spikes with resulting fluctuations in potassium. Salty foods will trigger an imbalance in potassium sodium ratios which can also cause muscle aches. I also strive for twice the rda of potassium by foods.. I believe the recommended daily allowances for potassium are low and that most would benefit by doubling the amount of potassium they consume through diet if possible.. Our ancient ancestors frequently consumed more than 8000 mgs of potassium daily with minimal sodium in their diets. I do have an ion channelopathy so I have done tremendous amounts of personal research on these subjects. It is important to note the medications that you are taking can affect the amount of potassium you can safely consume. Also an individual who has kidney problems should also be careful and always follow the doctors instructions.. but a healthy individual should be able to safely consume double the daily recommended amount of potassium as the body will rid itself of uneeded potassium. Due to my channelopathy (andersen tawil syndrome) I must take potassium sparing medication along with high doses of prescription potassium inorder to hold my serum levels at between 5.4 and 5.8 . If you are curious to know about Ion Channelopthies that cause muscle pain and chronic fatigue such as I have google Periodic Paralysis as well as the specific type I have to learn more.. I take pretty much the same supplements you do with extra coconut oil and also vitamin D which I tend to be deficient in..
    • emma83518
      emma83518 kattsqueen

      Posted

      Hi, thank you for your suggestion I'll definitely look into it! I'm a vegetarian so I will see what the alternatives are to the meat bits. I've been looking at the stone age diet, maybe this is similar? I'll try the coconut oil and vitamin D too, thank you again.

       

  • jackie00198
    jackie00198 emma83518

    Posted

    First of all, in case you do have CFS/ME, please stop trying to push yourself. Exercise can make that illness much worse. I assume you're in the UK. So, can't the NHS refer you to a specialist--someone who knows about CFS/ME? If you don't see someone knowledgeaable in this illness, they can steer you down a very wrong road. Also, Google CFS/ME and get informed. I hate to say it, but you are your best advocate. Often, with a lot of rest, a calm mind, and good nutrition, the illness wil get better on its own. But first you need blookwork to determine that you don't have an other illness. A diagnosis of CFS/ME is one of exclusion. There are currently no biomarkers.
    • emma83518
      emma83518 jackie00198

      Posted

      Hi Jackie, yes I'm in the UK (I first became ill while traveling abroad and this seems to either be part of it, or a knock-on effect.) I'm going to ask about being referred, I only found out yesterday that you could be referred to a specialist. The last time I was at the doctors I felt like there weren't really any other options as I have had so many blood tests done, an ultrasound and further tests done at a Tropical Disease unit, which were all clear (I'm very glad about this!), my doctor sent me away with some antidepressants which apparently help with nerve endings - but I felt even worse from them so they are definitely not right for me. This I feel is the wrong road, and not a solution. This forum has been wonderful, as even though I have done quite a bit of research, there seems to be much more help available that I didn't find myself. Thank you for your help.

       

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.