• 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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  1. nettle_tea

    SSDI: Quit when STD runs out, or get fired?

    Hi, thanks for all the advice! Turns out the leaving process was more drawn out than I imagined - I still retain my benefits as long as I am engaged in the long term disability process. Even though I've been denied long term disability, I have six months to file my first appeal. After that, I'm...
  2. nettle_tea

    Has anyone here got Small Fiber Neuropathy? - Question

    I am strongly suspected to have SFN (biopsy scheduled for January), but my primary symptoms are numbness and tingling. When I do feel pain, it feels more like a bruise than anything else.
  3. nettle_tea

    SSDI: Quit when STD runs out, or get fired?

    Note: this question is about SSDI only, not long term disability. I've been out on short term disability for 5 months. The maximum benefit period is 6 months, after which point my job won't be held open. My employers have refused all accommodations, it's frankly a hostile work environment, and...
  4. nettle_tea

    Lyrica patent - what does it mean for us?

    Good to know! My doctor doubled my prescribed dose with the instructions to increase at my own pace, but I've held off on doing that so I can at least have a bit to hold me over. I've been stockpiling all my medications.
  5. nettle_tea

    Lyrica patent - what does it mean for us?

    Lyrica is scheduled to go off patent at the end of 2018. Do we know if this is a certainty, or does Pfizer have some tricks up their sleeve to delay? If it goes off patent, how long until a generic form is available to consumers? I'm asking because I'm losing my awesome pharmacy coverage (along...
  6. nettle_tea

    How do you rest?

    Lately I've been spending about half the day in bed. On better days, I can be up & about (including sitting on the sofa) around my house for most of the day, but I still need a few rest breaks in bed. Other days, I alternate between doing a chore & lying down. I often browse the internet or...
  7. nettle_tea

    Time to stop work?

    I'm so glad it worked out for you! I get the sense that if I persist - especially with the support of a lawyer - I will eventually win.
  8. nettle_tea

    Time to stop work?

    Thanks everyone. I've let my doctor know that I won't be returning to work. I'm looking into lawyers to help me figure out whether I have a chance with LTD. There's a very good chance I'll be denied based on the pre-existing condition exclusion. If that happens, I'm not sure how much of a case I...
  9. nettle_tea

    Best ME/CFS or Neuro in Boston?

    If you think you may have dysautonomia, Dr. Novak (Brigham and Women's) does the most comprehensive testing. I'm still on his waiting list. Other than that, I'm not sure. I hope Dr. Novak will have some ideas for me.
  10. nettle_tea

    Manual Wheelchairs with Power Assist

    Update: My insurance APPROVED my wheelchair and Smart Drive. I didn't even have to appeal! Now I'm just waiting for the chair to be delivered. Hooray! I'm solidly in moderate ME territory now, and unable to continue working. I'll be back in touch with how the wheelchair is working out! I'm...
  11. nettle_tea

    Is rest the best way to recover from relapse

    Have you considered a mobility scooter to help you walk the dogs? It sounds like the walking is interfering with your ability to pace yourself, but since it gives you so much purpose and joy, I don't recommend giving it up just yet! There are ways to get out & do the things you love without...
  12. nettle_tea

    Time to stop work?

    Thank you everyone! I am feeling more comfortable with the decision to stop work. My doctor is very supportive - she validated how terrible my employer is being, and she has been encouraging me to consider long term disability if my body is telling me to do so. I'll give some more thought to...
  13. nettle_tea

    Time to stop work?

    I'm also in MA! And yes, I do have PEM. I'm probably at the "perfect" level of health to do the test - I'm well enough to pedal a bike if I have to, but I'd be a complete and utter mess on day 2. Where did you get the test done? I have LTD, but my eligibility depends on my doctor convincing...
  14. nettle_tea

    Time to stop work?

    I'm struggling with the decision to stop working. I'm not looking for advice - just support & validation. I have what I'd class as moderate ME. I was very, very mildly ill for a few years, then last fall I had a relapse that resulted in recurring leg weakness; since then I haven't been able to...
  15. nettle_tea

    What kind of job does everyone have?

    I am a library assistant at a rare books library, although I'm on short term disability leave right now. I've been working 4 days a week for the last year, and I hope I can figure out a way to get back to that. It's the commute that's killing me - I can't drive to work because there's no parking...
  16. nettle_tea

    Anyone got hayfever / cat allergy etc and notice a correlation to symptoms ?

    I have very severe tree pollen allergies, and a moderate dust allergy - I take 3 prescription meds every day, year round (Allegra, Flonase, and an inhaler for asthma), but the tree pollen allergy is not well controlled. This year, going outside for 10 minutes left me in unbearable...
  17. nettle_tea

    Manual Wheelchairs with Power Assist

    Well, I'm out on medical leave now. I've decided to get the ball rolling on a wheelchair assessment while I still have my awesome insurance. I don't have my hopes up for getting the power assist attachment paid for, but if I'm lucky, hopefully I can get a nice chair covered.
  18. nettle_tea

    Manual Wheelchairs with Power Assist

    Yeah, I think the SmartDrive would be better for people who can get around a little bit on their own, as using the power mode in very small spaces looks impractical. Users don't have to put their hands anywhere in particular, you just need to make a tapping motion to control it via the...
  19. nettle_tea

    Manual Wheelchairs with Power Assist

    Has anyone here tried a manual wheelchair with a power assist attachment, like this one? I'm just starting to look at wheelchairs, and in many ways this seems like an ideal solution for my needs. I could have the power of an electric wheelchair, the maneuverability of an ultra lightweight...
  20. nettle_tea

    Odd topic - robot vacuums - has anyone tried them?

    Yes! We have a Eufy Robovac (about $200). It's "dumber" than a Roomba, and therefore cheaper, but it rates just as highly in terms of suction power and it's apparently the quietest one on the market. Because it just wanders around randomly rather than learning about your house layout, it can end...
  21. nettle_tea

    OMF funds Harvard Collaborative Center and expands Data Center!!!

    I am SO EXCITED! This is happening less than 5 miles from my house! I get care at these hospitals already. I hope that - at the very least - it means I'll have an easier time finding specialists who are ME/CFS literate. (And, coincidentally, I work at Harvard, although I know nothing about the...
  22. nettle_tea

    what can be if there is no PEM?

    I didn't start to get PEM from exercise until relatively recently. But I've had PEM from other types of exertion for years. For me, it was more about staying out of the house for extended periods of time, having too many active days in a row, standing up too long (especially in hot weather), or...
  23. nettle_tea

    Fatigue & sinusitis

    I have chronic sinus issues, and supposedly my tonsils are enlarged. I get tonsil stones every now and then, too, which is gross and requires me to prod at my tonsils more than is probably sanitary. I wonder if I should look into just getting them removed entirely?
  24. nettle_tea

    PLEASE HELP MAJOR ANXIETY DO I HAVE CFS?

    As others have said, nothing about your story rings CFS alarm bells so far. But your symptoms are bothering you, and you're clearly anxious about them, so seeking treatment is the right thing to do.
  25. nettle_tea

    Never get fevers

    I haven't been tested, but I probably should. I could have easily been exposed in hospitals, summer camps, communal living situations, dorm rooms, etc. I may have even had an undiagnosed active infection at some point - I was too sick to go to school, sometimes for months at a time, during parts...
  26. nettle_tea

    Never get fevers

    I started having problems with fatigue, my immune system, temperature regulation, and orthostatic intolerance when I was 14. That was also when I was diagnosed with severe depression, had several hospital stays, and many medication changes. So all of my physical problems were either ignored or...
  27. nettle_tea

    Never get fevers

    I have had almost no fevers since high school, when my health began to decline. I've had pneumonia twice, several bouts of bronchitis, and probably at least one bout of flu, and no fevers. Ok, the second time I had pneumonia, several weeks into the illness, I started to get very mild fevers for...
  28. nettle_tea

    Introduce yourself

    Hi everyone! I'm Robin, I'm 30 and I'm a nonbinary trans guy living just outside Boston. I live with my partner of 5 years, and I've been sick for maybe 2-3 years? When my symptoms got much worse this fall, I decided to go ahead with all the specialist referrals I had been procrastinating on...
  29. nettle_tea

    Guardian goes BPS on Fibromyalgia (Lady Gaga)

    Is the CNS sensitization model a psychological model, then? I didn't think it was, but I'm new to the research.
  30. nettle_tea

    PEM from long car trip

    Yes, definitely. PEM from long car rides (especially when I was driving) started long before I developed problems with exercise. Long public transit trips are the worst. Being out of the house for long periods of time, especially in situations where I didn't have the option to lie down, were my...