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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Frank1918

    Fight Lyme Now - Petition (UK)

    Many thanks Sarah :)
  2. Frank1918

    Fight Lyme Now - Petition (UK)

    Signed. Thanks for posting the link Justy. I've had the Bullseye rash (erythema migrans) and still tested negative four times for Lyme through the NHS. I was given two weeks doxycycline and had to insist I was given another two weeks after doing my own reading. I may or may not have chronic...
  3. Frank1918

    Best earplugs?

    Out of all the ones I've tried these silicone putty ones work best for me: http://www.amazon.co.uk/Hush-Pairs-Plugz-Silicone-Earplugs/dp/B004TX1MVU/ref=sr_1_3?ie=UTF8&qid=1451471871&sr=8-3&keywords=silicone earplugs You can shape them like plasticine any size you want (don't make them too...
  4. Frank1918

    Getting a Laptop

    Hi Cindi. We were looking at laptops in a store today. I'm now exhausted and feeling a bit ill after spending two hours in there! But half the problem is the confusing amount of choice we have on the market. I heard one of the sales people talking to a customer and she was asking the...
  5. Frank1918

    Getting a Laptop

    Hi Cindi, can you say a little more about what you mean by wireless modem? Most laptops operate by wifi (wireless connection to the internet). Wifi - like cordless phones and mobile phones - isn't considered very healthy (they think this is one reason the bees are disappearing from the...
  6. Frank1918

    Getting a Laptop

    I'll be needing a new laptop soon as the one I'm using now is failing. I was thinking of getting one with an ssd drive as there is no problem with venting or heat. But I also thought you guys might be interested in a laptop bracket if you spend a lot of time in bed or don't want to have to...
  7. Frank1918

    1 hour remission, random occurrence of apparent shift in brain chemistry

    I've noticed a pattern of fatigue/ brain fog/ insomnia and the 'tired but wired' experience of being physically exhausted but mentally alert (then the reverse). Evenings tend to be clearer times for me mentally, and by normal bedtime e.g. 11-12 I'm tired physically but not ready to sleep...
  8. Frank1918

    How likely is high vit. C a mast cell degranulator?

    Hi folks. I take ascorbic acid (main component of vitamin C complex) daily, and in high doses with acute symptoms (I also take multiminerals so perhaps I'm ok with regards to copper levels etc). By high doses I mean anything up to 16 grams a day, with a minimum of about 3g daily. It seems to...
  9. Frank1918

    Itching driving me crazy!

    Hi Justy. I was told my itching is physical urticaria. Comes and goes but responds to antihistamines. Usually I start feeling itchy in the evenings and especially at bedtime. I've noticed changes in temperature and humidity seem to be a trigger e.g. changing clothes, getting into bed...
  10. Frank1918

    Feeling ill after eating

    Hi Ekaterina. I have similar problems. In the absence of any explanation, I've been assuming it falls under the umbrella term 'stress' i.e. the burden of digestion upon exhausted organs. Of course it could be anything - leaky gut, IBS, food intolerances, etc. Heavy meals seem to cause me the...
  11. Frank1918

    The Significance to ME/CFS of the Landmark Change to the UK Law on Consent

    I know. But it couldn't do any harm, especially if everyone handed over a leaflet. I've met two GPs who listened out of a dozen or so who couldn't get you out of the consulting room quick enough. I plan on giving my GP a copy of Hip's link for a start.
  12. Frank1918

    The Significance to ME/CFS of the Landmark Change to the UK Law on Consent

    This is a step in the right direction at least. But the information needs to get into the hands and heads of referring doctors to make a difference. Patients educating doctors is probably one of the quickest ways this could be done and I wonder if it could be helpful if someone put together a...
  13. Frank1918

    Muscle cramps with Trazodone

    Thanks 5150. I can't get LDN here sadly. I have a feeling it would really help me too. I'll look into Remeron. As for other remedies, I've spent a fortune over the years and am loathed to spend even more. 5HTP didn't seem to work for me, so I got some L-Triptophan, which allegedly works...
  14. Frank1918

    Muscle cramps with Trazodone

    Thanks mate. Yes, I mentioned dopamine agonists to the Dr. as many of my symptoms seem to suggest dopamine deficiency. It's still a possibility. For now I'm experimenting with cutting the Trazodone to try to get an optimal dose for sleep with as few side effects as possible. Problem is it...
  15. Frank1918

    Muscle cramps with Trazodone

    Cheers MG. I wake 2-4 usually too. I'm usually a fan of natural remedies, but years of insomnia and there are times when I'd take a muzzle to the right temple just for a few hours shut eye. Speaking of which, isn't Ambien the one that makes army vets go on spree killings? I have some...
  16. Frank1918

    Muscle cramps with Trazodone

    Thanks MG. Yes, I tapered off it the first time. Tried taking it alternate nights too, but it means I just don't sleep on the night I don't take it. Brand is Molipaxin by Zentiva.
  17. Frank1918

    Beginner's Guide: A Roadmap for ME/CFS Testing and Treatment

    Great thread and links. Thank you
  18. Frank1918

    Muscle cramps with Trazodone

    Hi folks, just wondering if anyone has experienced calf muscle cramps on waking, or chest tightness, or spinal tension whilst on Trazodone. I started 50mg per night two months ago for sleep (also waking in the middle of the night with very low mood). Very positive lift in mood for first 5 days...