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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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Search results

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    Dr. Rosamund Vallings' book on CFS - where to buy?

    Hi, everyone. I haven't been around for a little while but I thought I was going to give you an update on my health. It seems that just as I was feeling a bit better (May 16), my dentist found a mild chronic infection under a root canal I had done many years ago. He had to redo the root canal...
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    Tapering off Gabapentin

    You probably don't have to take that long, but this way you are certain it will work.
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    Tapering off Gabapentin

    I did that. I asked my GP to prescribe 50 mg pills instead of the usual 150. I lowered by 50 mg for the first three weeks and again for the next three weeks, and so forth. It went like a charm. The trick is to go slow. No rush. Take your time.
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    My nightmares getting worse

    I deleted my post. After looking up Lyrica and Neurontin + vivid dreams, I saw that most people are complaining that these drugs are making their dreams worse. For me, it was the opposite. So, I must be the exception to the rule. Stay away from them.
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    Burning / Raw tongue

    My GP gave me some magic mouthwash which has benadryl, nystatin and hydrocortisone. It does not solve the problem. Unfortunately, sometimes it even makes my problem worse.
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    Internal tremors, anyone?

    Many of our symptoms make us doubt that our illness is real. At times, they are so unusual. We don't know what to think. ;-)
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    OMG!!! Ear piercing = MAJOR relapse???

    I would like to get my pacing right. There is no way I could go from 6:30 to 10:30 without resting. Actually, I do a lot of it. Let's say I want to empty the dishwasher, I will do the first tray and then go back to my sofa. I get dizzy and can't keep going. After 20 minutes, if I feel better, I...
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    OMG!!! Ear piercing = MAJOR relapse???

    If it is a nickel allergy, I guess my body would react days, weeks, months later... as long as the jewelry is in my ear? It seems to be better. It has healed, I think. I feel better, too. My daughter is still having problems with hers (bleeding, crust, etc.).
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    OMG!!! Ear piercing = MAJOR relapse???

    Yes. Same here. Thank you for sharing this with me. I am not the only alien on this planet! LOL
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    OMG!!! Ear piercing = MAJOR relapse???

    I am sleeping a lot, lately. I guess I have a lot of catching to do. So, I don't need medication for this... at least, for the time being. I don't know what the tests are for Menière's. However, I remember that my GP mentioned it at some point. I'm sure he ruled it out. I'm so sorry for what...
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    OMG!!! Ear piercing = MAJOR relapse???

    FYI - I am sorry I left this discussion. A few weeks ago, my dad passed away. I had to take care of him at his home. Since I was not feeling very well, I was sleeping most of the time besides him. Well, at least, he was not alone. After his passing, I forced myself to stay in bed, so I would...
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    OMG!!! Ear piercing = MAJOR relapse???

    This is very interesting. Thank you. I have tried many AD (cymbalta, zoloft, amitriptyline, wellbutrin, to name a few) over the years but at some point my GP gave up on them. I was having too many side effects even at very low dose for pain. I wish I could sleep more. Some nights are very bad...
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    OMG!!! Ear piercing = MAJOR relapse???

    I have read so many stories like this one that I got very scared at some point and I think I got my very first... Panic Attack!!! Fortunately for me, I was able to use a bit of the relaxation tricks I got during my CBT sessions. At least, it worked and I was back to my normal self after that...
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    OMG!!! Ear piercing = MAJOR relapse???

    I just remembered that my legs gave out on me (with a lot of pain) a little while after the piercing. I had walked too far and my daughter had to push me out (sitting on my walker) of the building. It is a very big shopping mall and I wanted to purchase some birthday cards for my son's birthday...
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    OMG!!! Ear piercing = MAJOR relapse???

    You probably explained somewhere what you did to get better. Would you mind sharing your treatment with me?
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    OMG!!! Ear piercing = MAJOR relapse???

    There is one condition that describes what I am experiencing right now. It's called: Systemic nickel allergy syndrome (SNAS). I don't know how legit this is... However, they mention CFS. They also mention that many who have SNAS are also lactose intolerant, which I am.
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    OMG!!! Ear piercing = MAJOR relapse???

    How long did it take before you got better?
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    OMG!!! Ear piercing = MAJOR relapse???

    From Wikipedia: Allergic reactions, when they occur, are rarely due to the stainless steel but from other factors (most commonly from mechanical irritation or harsh cleaning products). Allergic reactions typically include itching, redness, and swelling, with a discharge of clear fluid that is...
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    OMG!!! Ear piercing = MAJOR relapse???

    LOL I hope I will be able to wear some after this. When I got sick with ME, I started writing down how I felt on a calendar. At the beginning my calendar had more than 20 smiley faces per month. As the months went by, I had less and less good days. Now, I have none. I can't help it but feel...
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    OMG!!! Ear piercing = MAJOR relapse???

    Same here. Do you get the blackening as well around your piercing?
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    OMG!!! Ear piercing = MAJOR relapse???

    Thank you for this, Alex. My piercer did tell me that there was some nickel in it, but it was not enough to trigger a reaction. I might not be allergic to it but can't tolerate it. I do not have the peeling sign and the discoloration I have usually. I guess the worst thing that could happen is...
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    OMG!!! Ear piercing = MAJOR relapse???

    I was so sick that night. Could not stay up because of the severe migraine-like headaches (making effort to throw up) and could not rest my head since it would trigger the nausea more. I finally took some fiorinal which helped a lot. I was able to sleep two hours. I have been waking up every...
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    OMG!!! Ear piercing = MAJOR relapse???

    I believe i am allergic to nickel. My ears start peeling and they are very itchy when i wear the wrong jewelry. However, the lady re-assured me that the earrings were made of surgical steel. At the beginning, I had weird symptoms. My cheeks were red and inflamed. They felt numbed. This comes...
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    OMG!!! Ear piercing = MAJOR relapse???

    It started four days after I had it done. I felt miserable and had diarrhea. That night, the nausea got so bad I almost ran to the ER. It felt like I had an extreme bout of the flu. Since then, my cheeks have been flushed. I feel hot but no fever. I get the chills and night sweats. It has been...
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    OMG!!! Ear piercing = MAJOR relapse???

    Is it possible that I am reacting to having one ear pierced? I am so sick now. It feels like I have been poisoned. :-( Have you had a similar experience?
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    Things I'm grateful for, feel free to add

    Grateful that I feel better between relapses. I could not survive otherwise.
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    Is a headache lasting 4 months solid "normal" for ME?

    BTW, when I say to never underestimate a symptom, I was doing that a lot. For the longest time, I thought my headaches were due to my eyes (bad glasses) or too much coffee (I only drink decaf now). It's easy to find culprits. Everything seems to fit. Stomachaches were due to nervousness. Pain...
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    Is a headache lasting 4 months solid "normal" for ME?

    When in doubt I always go back to Carruthers et al (definition of ME). http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf Headaches are mentioned under the category PAIN (end of page 4 and beginning of page 5). Mine also started more than a decade ago and they never went away. (24/7)...