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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. R

    anyone have burning, aching legs?

    Updating progress, @Stretched and @TrixieStix. Have been taking the Celebrex & Famvir combo since early Feb., the really sharp painful burning in feet went almost away, or I thought it had majorly improved, legs /feet still swell/hurt but I could stand without them hurting immediately like they...
  2. R

    anyone have burning, aching legs?

    Agreed, I plan on mentioning it at my next appt. at any rate. If it is a co-immune disorder, it makes sense to me tht it would effect more people w/ this illness too.
  3. R

    anyone have burning, aching legs?

    I have them in my cart, but if I get on the combo, I will wait so I know the pos/negs are attributed too, you know what I mean. But, I will leave them in my cart, so I can always add them in down the road.
  4. R

    anyone have burning, aching legs?

    Thanks @TrixieStix I do have a lot of those symptoms, and it is just the cartilage that burns on my ears/gets br red. I have the nose/facial redness, throat/neck issues. If I talk for any length of time/which is rare nowadays I will get very hoarse too. A few months back I had some issues w/ my...
  5. R

    anyone have burning, aching legs?

    @TrixieStix Yes from what the neuro told me it seemed pain mgmt. was about the only thing at the time. I wonder about the vasculitis too, since I swell up so badly, it just feels like I am constantly inflamed for lack of a better term. On my feet/legs, they blow up, use my arms/shoulders, they...
  6. R

    anyone have burning, aching legs?

    @Stretched Thanks very much, yes for me it is a reality too, and need to change if possible, I keep hoping. I will try to see if I can get them, not sure if my ins. formulary covers the Celebrex, the Famvir is on the formulary, but monthly limits, so will have to see. I have tried Prednisone in...
  7. R

    anyone have burning, aching legs?

    Thanks very much @Stretched , I tried Valtrex in Dec. b/c I also believe in this theory, but it alone did not seem to help too much, but I was only on it for like 3 weeks. Can I ask what is the dose for the Famvir/Celebrex combo is and does your ins. cover it? I will be calling Monday to try...
  8. R

    anyone have burning, aching legs?

    I forgot to mention my feet/toes lower legs get very, very cold in winter, like ice blocks, my Dr. can tell a sig diff. just by touch. I was reading a few of the other threads, I also have inner ear issues/chronic sinus issues/inflammation/etc.. I am of the mind that inflammation is what I am...
  9. R

    anyone have burning, aching legs?

    Someone mssg'd me, so I am going to update my experience best I can to date: Still having major bone pain & edema/swelling has only gotten worse. My feet & legs swell the most & arms/shoulders, but everything does now with minimal exertion. My feet/toes have been getting really swollen to the...
  10. R

    Kidney function elevated will an ultrasound be any benefit?

    Hi Barb, I do not think it is just a theory, as it was from a pub. study. When I looked last year, I found several articles relating to it, ie: the creatine/muscle breakdown in CFS, one said if you had it, it was considered a "gold standard" biomarker that you indeed had ME/CS. If I get the...
  11. R

    Kidney function elevated will an ultrasound be any benefit?

    Hi Barb & all, thanks for the responses, I had the ultrasound done last Fri. will get the results at next visit. I just looked it up again, there are several things about the elevated creatinine from creatine due to CFS/infections. I have only a mildly elevated level, so I do not think kidney...
  12. R

    Kidney function elevated will an ultrasound be any benefit?

    My kidney function has been elevated for awhile now, Creatine is the main one, from what I have read previously it is just a normal side effect of ME/CFS which I have told my Dr. as I didn't think there was much to be done for it. My labs from last Wed. came in today and they want me to do a...
  13. R

    Symptoms By Deadlock Quartet and other nutrients

    Fredd, I have a lot of these issues in sev. of the list you posted. If you could read my org. post I posted, that might help too. But I would really like to start your protocol, but I am not sure how I should start, ie: how many, dosage, etc... I have been having a lot of pain issues and losing...
  14. R

    anyone have burning, aching legs?

    yes, I have taken probiotics, done Bragg's Apple Cider vinegar drink, yogurt, etc...A friend is getting me something she takes, it's from an organic food store, I can't think of the name now. But, yes I too was worried about gut flora being wiped out. As for the swelling it only happens in my...
  15. R

    anyone have burning, aching legs?

    Hi, new to posting here, but not new to this illness. I have the pain in my lower legs as well, and it is pain. It feels like it is the bone that hurts, it is worse if I am standing or walking on them for even short periods of time this symp. started in 2008. But, I had been dealing w/ other...