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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. paulie

    New patient from the UK: CFS specialist or neurologist?

    My experience with GPs is really not good. They are all nice enough but I have little confidence in their expertise. When I first got ill I discovered I had developed a caffeine intolerance. I saw six different GPs none of whom suggested I may have a food intolerance. I was just put on different...
  2. paulie

    New patient from the UK: CFS specialist or neurologist?

    It's all very frustrating. I understand the neurologist would not be of much help. But ruling things out is a big part of diagnosis. I just wish the health service in the UK were more focused on root causes rather than symptom treatment and hoping patients just get better and don't need to keep...
  3. paulie

    New patient from the UK: CFS specialist or neurologist?

    Well spotted :) I have been on 4 different anti-depressants over the last few years. The last one I stopped as I felt it just made my fatigue worse - as they all did really. It is true that the anti-depressants caused twitching. This is when I first noticed the twitching because a lot of the...
  4. paulie

    New patient from the UK: CFS specialist or neurologist?

    I have just emailed the clinic to enquire as to what the blood/urine tests are. The information leaflet I was sent doesn't say anything. That is a good point about previous CBT. I learned a lot and found it facinating doing CBT in particular group CBT for social anxiety. I think I agree I have...
  5. paulie

    New patient from the UK: CFS specialist or neurologist?

    Thanks Kati. Have used your suggestion for the title.
  6. paulie

    New patient from the UK: CFS specialist or neurologist?

    Thanks Kati, I'm UK based. The clinic that I have been referred to specialises in CFS judging by the pamphlet I got with the letter. It's just that I suspect the treatment is based on what the article I linked to is saying is founded on bad science. Because I have non stop twitching in my calf...
  7. paulie

    New patient from the UK: CFS specialist or neurologist?

    https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/ Out of pure chance someone I follow on twitter shared it. Interesting for me as I am as yet undiagnosed but have just been referred to a clinic which does CBT. My doc gave me two choices of neurologist or clinical...
  8. paulie

    Photograph - Medicine

    I am sure many, if not most of you, can relate to this. I just wanted to document it. I don't doubt that many of you will have tried significantly more than me too. :( Title: Frustration & Desperation Subtitle: A failure within the health system.
  9. paulie

    Hypothesis: Restless legs, SSRI GABA, Glycine and sleep paralysis

    Thanks for the reply and welcome. I have recently stopped the antidepressants (venlafaxine xr). I have stopped for about 3 weeks now. The fatigue was just too much and was making me miserable. The withdrawal effects weren't very nice even though I tapered off slowly but they are subsiding now...
  10. paulie

    Hypothesis: Restless legs, SSRI GABA, Glycine and sleep paralysis

    I take Venlafaxine which causes a lot of muscle twitching. I get jolts which I feel but also a lot of twitching that I can't feel but can see when I look at my calf muscles - this is going constantly 24 hours a day. I have also been experiencing sleep paralysis - not the weird dream kind where...
  11. paulie

    Do all people with CFS commonly experience flu like symptoms

    Just wondering. I have read in numerous places that symptoms like sore throats and colds are part of cfs , that people with cfs are prone to getting frequent colds. I very rarely get colds. Once a year or maybe less even. I have always been that way. In fact I probably get even less now...
  12. paulie

    D-Ribose and the failure of the scientific community.

    Will check out the mendus site. Thanks for the link. I would have thought community based research projects would be problematic. Isn't insurance a high cost in scientific research involving real patients? Also would mendus send pills out to people? Is that how normal research of this kind is...
  13. paulie

    D-Ribose and the failure of the scientific community.

    Yes I agree that would make sense. If ribose does help people then there should be some underlying issue where not enough ribose is being made by the bodies cells or something like that. Having said that if ribose was confirmed as being significantly helpful then it may be accepted generally as...
  14. paulie

    D-Ribose and the failure of the scientific community.

    Fair point about the cfs community not raising enough either I understand that governments have limited resources and so can only grant certain research projects funding. Given the long term strain on resources cfs must have though I would have thought it might get some funding. Guess other...
  15. paulie

    Question for former athletes/fitness rats

    Very interesting thread. Having only recently been learning about mitochondrial dysfunction I had been thinking about why I was so bad at certain activities. I was never sporty at school. I hated athletics particularly the longer distances. The annual bleep test (running back and forth in the...
  16. paulie

    D-Ribose and the failure of the scientific community.

    I have just started supplementing with d-ribose along with coq10 ( ubiquinol), l-carnitine and niacinamide. I have in the past tried supplementing with b12/d3/k2/magnesium/kelp/coq10 (ubiquinone) and multivitamins/b-complex. The reasoning behind these new supplements I am trying make sense in...