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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. SmokinJoeFraz93

    Glycogen Storage Disease Type 5 (McArdle’s Disease)

    Waiting to see a geneticist so we can delve a little deeper. Will update you.
  2. SmokinJoeFraz93

    Not ME/CFS related, but do you reckon these hands need firther

    I should’ve elaborated. The wonky-like shape of my fingers. Joint pain in the areas where rheumatoid arthritis is typically seen (feet, knees, hands, wrists) and in my case groin and lower back. All pain is symmetrical (both knees are in pain etc etc.). bloods came back normal (CRP, and certain...
  3. SmokinJoeFraz93

    Not ME/CFS related, but do you reckon these hands need firther

    Pain throughout my body (symmetrical) and deformity has started in my hands. I’m 28 years old and my X-Ray results came back needing “NO FURTHER ACTION”. Do these hands look normal or do you think I need a second or maybe third opinion?
  4. SmokinJoeFraz93

    Not ME/CFS related, but do you reckon these hands need firther

  5. SmokinJoeFraz93

    No sweating and heat intolerance.. Thoughts?

    Thank you. I have refrained from seeking medical help for these issues due to the wide variety of symptoms I have, and I'm also sick of specialists not believing me. I shall get in contact with my doctor.
  6. SmokinJoeFraz93

    No sweating and heat intolerance.. Thoughts?

    From around 2015 when I was physically active, I realised my body stopped sweating. It doesn’t matter how hot the weather is, or how fast my heart beats or how far I walk, my body will not sweat. Whenever my body feels hot (like a flush feeling), I will feel a prickly sensation throughout my...
  7. SmokinJoeFraz93

    Glycogen Storage Disease Type 5 (McArdle’s Disease)

    Hi Judee, I admit I am on the light end of the spectrum with GSD5, even though I was in a wheelchair. The reason I say this, is because my body was so unconditioned due to weight gain and lack of activity, that that’s all I needed was to condition myself again, but my brain wouldn’t let me due...
  8. SmokinJoeFraz93

    Glycogen Storage Disease Type 5 (McArdle’s Disease)

    For around 5 years I have been convinced from the bottom of my heart that I have had ME/CFS, however since delving into my genetics, it has come to my attention that I may not have ME/CFS, but two conditions - Glycogen Storage Disease Type 5 (McArdles’s Disease) and Autism Spectrum Disorder...
  9. SmokinJoeFraz93

    Are these Neurological & Neuro-Psychiatric symptoms consistent with ME/CFS?

    Hi, I thought about brain injury from boxing. I would spar 3 times a week with and without a head guard. Full contact punching was a normal thing within the gym, with most of the time we would have heavy sparring sessions (toe-to-toe punching). In terms of MCS, I do/did have this which I think...
  10. SmokinJoeFraz93

    Are these Neurological & Neuro-Psychiatric symptoms consistent with ME/CFS?

    I haven’t had any tests done relating to the ANS, neither have I had any brain scans or any comprehensive testing apart from the standard testing the NHS provides such as the usual blood work that GP’s are supposed to do. When I saw a neurologist, she did an examination (looking into my eyes...
  11. SmokinJoeFraz93

    Are these Neurological & Neuro-Psychiatric symptoms consistent with ME/CFS?

    That makes a lot of sense, as a quick google search explained these behaviours, as well as a fear of death (which I have also). Thanks for your input :)
  12. SmokinJoeFraz93

    Are these Neurological & Neuro-Psychiatric symptoms consistent with ME/CFS?

    If you are unable to read the opening part, please scroll down where you’ll find my symptoms in bullet points. They’re split in two sections; Symptoms that first appeared when I became unwell with ME/CFS and symptoms I have to this present day. When I got diagnosed with ME/CFS in 2015, I put...
  13. SmokinJoeFraz93

    Binaural beats app (android - free) helping with sleep

    You do grounding also? Whenever we get sun here in the UK, I do the same.
  14. SmokinJoeFraz93

    Binaural beats app (android - free) helping with sleep

    Thanks for tagging me, @Mary - and I apologies for the late reply. I hope this method is still working for you?
  15. SmokinJoeFraz93

    Where to start with the testing my immune system?

    Hey, thanks for replying to me. I have observed within myself what I believe to be Th1/Th2 shifting (or vice versa) when I introduced cannabis to my treatment plan. (I’ve heard that cannabis can introduce this shift). As for the NHS, I’ll leave them where they are. I’d rather attempt to go...
  16. SmokinJoeFraz93

    Where to start with the testing my immune system?

    I’ve had ME/CFS for nearly 6 years, and I’ve never had my immune system checked. The fascinating thing is, I haven’t been unwell once (in terms of flu, colds, bugs, viruses etc) in the WHOLE of 6 years, whereas before I became unwell with ME/CFS, I was always unwell with stomach sickness etc...
  17. SmokinJoeFraz93

    Is there an optimal Folate range?

    Hey, thanks for the reply. May I ask how you came to that conclusion? Yes, I take my B vitamins as well as B12 injections in the form of hydroxocobalamin. I also see that you have VDR TAQ? I also have that (VDR TAQ +/+). Have you found a way the better this SNP? Thanks.
  18. SmokinJoeFraz93

    Low-dose naltrexone (LDN) - how's it working for you?

    During one of the worst experiences I’ve had of this illness, my brain found it incredibly hard to process simple tasks such as washing my hands, styling my hair and even tying my own shoe laces. Just a simple thought of having to style my hair would result in the most horrendous feeling In my...
  19. SmokinJoeFraz93

    Is there an optimal Folate range?

    I had my serum folate levels tested a couple of months back, and my results are “normal”, but looking at where my folate levels land, I can see it’s only located halfway on the reference range. I take 800mcg daily of methylfolate, and the fact I have MTHFR A/G as well, I’m just wondering if...
  20. SmokinJoeFraz93

    Impressive results from using GABA-B agonists. Why is this?

    Thanks for the replies guys. Before trying the phenibut and baclofen, I wanted to go down the ‘natural’ route. Kava was my first stop, and I sourced it from a guy from the UK, as American companies don’t ship straight to the UK. I will admit, I am really disappointed with Kava. A lot of money...
  21. SmokinJoeFraz93

    Impressive results from using GABA-B agonists. Why is this?

    I finally decided to try pharmaceutical drugs after learning the hard way that supps like valerian and theanine alone weren’t going to sort out this ridiculously hyperexcited brain of mine. I’m intrigued as to why I improve with GABA binding substances. I’m taking fairly low doses a handful...
  22. SmokinJoeFraz93

    Libido. Help needed. (A POST FOR THE MEN!)

    I last longer whilst masturbating (when I actually masturbate), but not as long as I’d like to.
  23. SmokinJoeFraz93

    Libido. Help needed. (A POST FOR THE MEN!)

    Hey! It could well be psychological. I’ve suffered mental health issues since a child. Perhaps sympathetic dominance could be causing the pre-ejaculation. I’m a daily user of marijuana, but have noticed no change whatsoever in libido. Well I’d say I was healthy in terms of sexual appetite...
  24. SmokinJoeFraz93

    Libido. Help needed. (A POST FOR THE MEN!)

    I’m 25 years old (Male) with experience of sexual intercourse. However, since becoming unwell with ME, my organism doesn’t feel like sex, neither do I get much erections. Masturbation is practically nonexistent. I’ve ALWAYS suffered from pre-ejaculation and sex has never lasted long because of...
  25. SmokinJoeFraz93

    Increasing GABA naturally

    Today I took the plunge and put 2 cups of Epsom salts in minimum amount of water to the point of where the water fills up to my feet approximately half way in a standard dish basin. I have been taking magnesium at what I thought was high doses for nearly a year, and have not felt the amazing...
  26. SmokinJoeFraz93

    My Genetic Genie Results. Where do I go from here?

    Hi, thanks for your reply. I really appreciate it. Now this has got my attention. I’m intrigued to know what sort of symptoms one would see with hyperplasticity in the brain stem? I have researched the studies - however, I don’t know if it’s the study that you are relating to. Cheers.
  27. SmokinJoeFraz93

    My Genetic Genie Results. Where do I go from here?

    Thanks for the reply guys. I am awaiting an assessment for autism, but it may take a while on the NHS (in the UK). I had a major mental breakdown at aged 15, and looking back, it was definitely to do with massive changes in my life (i.e, sexual exploration/relationships, work, etc etc). I was...
  28. SmokinJoeFraz93

    Increasing GABA naturally

    Do you ever repeat the foot baths multiple times a day? I put 2 cups (or there about) in a spray bottle and use that daily. So I will be getting much more, which is good for me as I think my severe exercise has depleted so many minerals and so forth that I don’t even know where to bloody start...
  29. SmokinJoeFraz93

    Increasing GABA naturally

    I don’t think you’re condoning anything. Every one of us are unique, especially in our “treatment plan”. I have severe sensory overload to the point where if I don’t use marijuana daily (reduction in calcium signalling), my brain can’t tolerate any sound or light. I’ve heard magnesium as being...
  30. SmokinJoeFraz93

    Increasing GABA naturally

    May I ask how much magnesium and potassium you take daily (roughly)? And it what form? Cheers. :)