• Welcome to Phoenix Rising!

    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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Search results

  1. N

    Just Arthritis in hips or CFS as well?

    Hi sorry for the delay in replying. No I haven't take any fluoroquinolones. Almost wish I had, we might be on to something. Funnily enough, I am at the moment taking a penicillin antibiotic for a mouth infection which is giving odd side-effects but nothing to do with the hips. I think I am...
  2. N

    Just Arthritis in hips or CFS as well?

    Oh boy. Bit of a sad update. The last injection definitely hasn't worked. Had my follow up with my consultant but was so brain-fogged because of unavoidable activities the night before that I didn't really question him as much as I wanted to. He was adamant that the degree of arthritic disease I...
  3. N

    Just Arthritis in hips or CFS as well?

    Thanks all, and I do mean all, for your replies. I rarely start threads and it's even rarer that I like every reply that I get. This summary in particular: "Summary - It is very difficult to tell if the root problem of pain and/or osteoarthritis in some joints are caused by something that could...
  4. N

    Just Arthritis in hips or CFS as well?

    Hi all. Need help with a symptom I’ve been suffering for a while now. About two years ago, I started suffering pretty bad hip aches. It came on suddenly, but persisted and affected my walking and balance (already bad and stiff) so much I had to buy a walking stick. I thought, like other various...
  5. N

    How many steps do you take a day?

    I subscribe to all this. MY ME is seasonal and I'm much better in warm weather (which make me think it's a circulation issue) but I can manage around 700 steps on any day. It's hard for me to get started but once I am I can keep going for at least 10 minutes at my best. However, standing still...
  6. N

    Will You Be Getting the Covid Vaccine?

    Haven't been on the forum in ages due to mental health problems with the lockdown, but am better now and can share my experience with the Pzifer vaccine. I have avoided taking vaccines for over 20 years since I had a hospitalising reaction to a travel jab. Not 100% convinced of the long-term...
  7. N

    Tracking CCI / AAI MRI & Treatment outcomes

    Actually, sod it. I'm going to tell my story now. I haven't mentioned it anywhere here before but I have Chiari type 1 malformation with syringomyelia. I first developed the classic symptoms of both conditions (nerve numbness, nystagmus, instability, swallowing problems, muscle weakness and...
  8. N

    Tracking CCI / AAI MRI & Treatment outcomes

    Oh, hello. I'm not on the site much and only did a quick scroll through the thread, so didn't realise you were the actual JenB;) On behalf of myself and all the others you've helped with you advocacy, thanks for all you've done and continue to do. While your surgery may not have been a total...
  9. N

    Tracking CCI / AAI MRI & Treatment outcomes

    Does anyone know how Jeff from MEchanical basis and Jennifer Brea are doing as of now? Are they still in remission/cured?
  10. N

    DOES THIS SEEM LIKE IBS?

    Thanks very much for all the replies guys. I suffer from brainfog and the cold has slowed my thought processes to a crawl ATM. So it'll take me a while to (ahem) digest the info and reply fully. For now though, @Foxglove I have avoided the colonoscopy precisely because of the prep. I forgot to...
  11. N

    DOES THIS SEEM LIKE IBS?

    Hi guys. Long-time sufferer of ME here. Have had on-off stomach and lower bowel problems for the last twelve years or so. Nothing major, mostly digestive (bouts of gurgling and flatulence) malabsorption (inability to put on weight) and bouts of constipation which seemed to be caused, as strange...
  12. N

    Does anyone else have slow wound healing?

    Further report. As I mentioned in my first post above, I have slowed down on the exertions and DIY that used to cause the odd swelling and bruising that I got. However, about a month after I last posted, I had to engage in an unavoidable building project or fall even further into debt. The...
  13. N

    Parent with ME - need help with taxes/benefits?

    Hi there. Sorry to hear about your mother. Depending on her circumstances your mum may actually be entitled to two benefits. PIP and ESA. PIP is non means tested, meaning it doesn't matter how much savings or income you already have, it's purely on how disabled you are. Well that's the theory...
  14. N

    My Airbnb Situation..

    Just read most of this thread as I'm looking at ways of generating income and am lucky enough to have a property but it's mostly just confirmed my thoughts and past reading. I'm not female, so fending off unwanted advances from men in my own home won't be a problem.But frankly, I had to fight...
  15. N

    No pip

    Best of luck Lior but you are right to keep your guard up. As a vet of more assessments than I care to remember, these snakes are trained to fake a good rapport with claimants. You are of course right that treatment for CFS is pathetic but I am surprised that being as unwell as you are and...
  16. N

    No pip

    @lior glad to hear you have such a supportive friend. Yes you are lucky, but the friendship says a lot for you as a person too. Thanks for the heads up on ignoring threads. Now you've said it of course, it's obvious but then again, brain fog doesn't do obvious ;). Once again all the best to...
  17. N

    No pip

    Sorry to hear that lior. I don't blame you for feeling angry and frustrated...but... even though it might not feel like it right now, every cloud has a silver lining and all that. The extra time may allow you to be even better prepared for your assessment though I'm sure you focused hard on it...
  18. N

    No pip

    I was going to start a new thread but I decided to check the forums first and found this: http://forums.phoenixrising.me/index.php?threads/please-read-if-you-are-claiming-about-to-claim-esa.56465/ I have added all the info I have to this thread instead. Hope it helps.
  19. N

    No pip

    Hi @Skycloud I haven't made a thread but I will take up your suggestion. People need to know what they're up against and how the goalposts have changed yet again.
  20. N

    No pip

    Sorry to hear about your situation Jessie 107. I hope you take comfort from all the advice and support you've got here and best of luck. I've never been on PIP but do know three people who have been awarded it at appeal and one of those was initially awarded less points than you (she ended up...
  21. N

    Does anyone else have slow wound healing?

    They don't heal at all or they take a really long time to heal like your knee scar? The latter, I believe is quite common. But not to heal at all would put you in the 25% category unfortunately. I hope you're still able to live independently. I'd be interested to know what levels of exertion...
  22. N

    Does anyone else have slow wound healing?

    I have had ME for just over three decades now and slow healing was one of the first symptoms I noticed. Prior to being chronic I healed fairly fast, but since then my skin seems to be the old guy crossing the road while my life is one of the cars at the lights, honking him to hurry up. I bruise...
  23. N

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    Hi Mariah. PWC is (I think) People With Chronic. I say "I think" because I can never be sure with the damn brain fog. But that's what I take it to mean. Sorry to hear the hold the vertigo has on your life and that you have the progressive type of ME. Like most, my ME has generally got worse over...
  24. N

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    @Mariah: One of the more medically-knowledgeable posters will probably be able to tell you exactly what's going on but I just wanted to reassure you that it's not in your head. PWC are supremely sensitive to neurological disturbance even though there often seems to be no logical connection...
  25. N

    What Are Your Most Amusing (Or Disconcerting) Brain Fog Experiences?

    I don't have a funny story to tell. Well I do, but after reading this thread I don't really want to post any. I just wanted to say is it wrong that I draw so much comfort from all these stories? ;) "Me too". The most reassurring words in the English language. Apart from "Yes, I can confirm you...
  26. N

    I hate this life

    Too tired to read more than the first page right now, but I'm glad so many people have reached out to you Sickofsickness. I can relate to everything you say but in the midst of all the good advice and support you got, the above quote really stood out to me. I have been ill for thirty years now...
  27. N

    Difficulty "seeing" things in plain view

    I don't think it's quite the same. I believe the watch thing is a memory problem while the lack of visual recognotion is a processing problem. I have both. Not to long ago I was looking for my mobile and it was in my hand. Imagine. I used to feel really down when such things happened. Now I just...
  28. N

    Fibro looks like it has got permanently worse....?

    Thanks GH and no worries for replying late. It happens. I'm almost glad that you get activity swellings as well. It's not a symptom that I've heard of anywhere else and I was worried it was something outside of M.E. It funny that you talk about opioids. They are the only thing that's helped me...
  29. N

    Fibro looks like it has got permanently worse....?

    Hi Gonzohunter. Sorry for the late reply. I could have sworn I replied to your post..? In fact I know I did... my fog can't be that bad... was it deleted because I posted a link to another thread or something...? Anyway, I don't take any pain meds because I tend to react badly to all the ones...
  30. N

    Fibro looks like it has got permanently worse....?

    Thanks for the replies guys. Hyper-coag is a new one on me. I'll have to reseach this, infra-red and the other issues raised. I guess I took the seasonal relief I normally get for granted. We are in the middle of heat wave where I am and the physical relief has been minor compared to what I...