Recent content by JayCS

  1. J

    Was my fibromyalgia diagnosis too 'easy'?

    No problem :) : The short answers are: Some kind of Ache about 8? years, first flares 2016, full flare since Aug19, first rheum. Oct19, diagnosed by 2nd rheum. Feb20. In case you have time for the longer story...: Doctors that treat fibromyalgia or Frustrating Appt with Rheumatology (the text...
  2. J

    Trying to cope with fibromyalgia

    Hi Affinity :) (still love the name! :) - I hope you'll be back...) - I've now looked into the book, esp. the practically-oriented first chapters & sort of done a guided meditation by him on youtube. I agree totally with your description. Helpful for people who don't know mindfulness or...
  3. J

    Experiences with (High Powered) Laser? Managing pain and trigger points

    Hi Felipe, seems I'm in a similar position, so you might like to read my past postings... :cool: Since cryotherapy ("Kältetonne", -150°C 4x/wk, better than the cold-chamber at not much less than -100°C in the rheum clinic 1-2x/d) plus (ear-)acupressure ("Ohr-Akupunkt-Massage nach Penzel") is...
  4. J

    Was my fibromyalgia diagnosis too 'easy'?

    Hehe, I've accumulated 40+ in the past year (& fared pretty well with most of them, at least they tried their little best) so I should know by now...
  5. J

    Not sure if I am in the right place but would appreciate feedback..

    I agree with sunkacola. I'd think there may be fibro in there, but wouldn't be satisfied with that alone, because your symptoms seem so far-reaching. For the bodily issues I'd try osteopathy. Would you call your eyes, mouth & throat (& more) *dry* by any chance? ("sicca")
  6. J

    Was my fibromyalgia diagnosis too 'easy'?

    Hi Dandy - I'd suggest not to directly disagree with your GP, but instead to ask for autoimmune testing, considering your family history. Also the elevated rheumatoid factor level still seems suspicious. I'd ask to go the rheum. 'just to be safe'... And getting your muscles & nerves checked by a...
  7. J

    Nausea advice

    Oh dear: Only for some - everything minty makes my stomach burn like I haven't eaten for a day, even if I just have. Peppermint is often put in stomach remedies, even for hyperacidity, so I seem to have a mint intolerance (incl. toothpaste, chewing gum, even the essential oil odour etc.) Instead...
  8. J

    Was this a Diagnosis

    Or several docs, and each has their opinion ;-) If a doc says it's very likely, they often write it down as certain in their reports. Had that for depression: 1st psychiatrist says *might be depression, his report says: it is depression. Not checking it. All non-psychiatrists adopt this, even...
  9. J

    Sore throat/neck

    I often get a sore throat at night, could come from my dryness. I always get it down to zero by putting a hot water bottle on my feet, plus gurgling with Marigold Essence (or salt water, even saliva helps, I've read).
  10. J

    Can Fibromyalgia hide other illnesses?

    Hi - true, that's another reason why I've completely stopped asking or even thinking the question: "Could this be fibro?" When I thought I was thru with lots of specialists, my GP by chance checked my blood pressure, seeing as pain can increase it. Plus my alternative practitioner had the idea...
  11. J

    Suboxone for pain

    If you do have to continue taking it: How about taking it earlier before you go to sleep (like people say & I did with Amitriptyline)? And is it possible for you to take less? Whilst taking it, you could now quickly start implementing other the whole host of other pain & sleep management...
  12. J

    Neurologist - how long did you wait to be seen? UK - NHS

    Hi Tazza - sorry, not UK/NHS. But: Yes, I experience a dull ache/pain in my lower back most of the day and night. I get it down pretty much by osteopathy / acupressure / cold showering it / exercises and yoga for the lower back. My body also aches all over: finding the invisibly moving sweet...
  13. J

    A polite whine

    Hey Jen - glad you took a look in here and no problem writing a small part of what is tearing you up at the moment. I'm one of the ones you're asking for, not being able to take any meds - sunkacola is similar, so watch for her great advice overview. My 4-month-Amitriptyline-story is: no...
  14. J

    Hello all I was wondering what everyone thought I should do?

    Hi Courtney, interesting, your whole story: quite a bit...! Which home remedies do you mean? Would you want to do something more about these symptoms? Because as sunkacola's great advice says: the diagnosis alone won't help you much. With what are you thinking of starting?
  15. J

    Chronic UTI’s

    Hmm, I don't understand: If you have UTIs, he must have found something, or not? Or do you mean bladder pain? That's something different, and quite a few 'fibromites' have it. I have pain before peeing and have to go often, but neither my urologist nor my nephrologist has found anything, which...
  16. J

    What is this? Pain in my face

    Thanks for your encouragement, sunkacola!🥳 Goes without saying on my part (but I do like to every now and again) that your advice-post is of course great... Just that we agree completely... 👍
  17. J

    Newly diagnosed with Fibromyalgia

    Despite it having been an older thread: Just want to remind that psychology is only a part of this... It needs resources, determination & motivation, working on, but also adapting to and accepting it and yourself. It's about coping and *trying to overcome...
  18. J

    What is this? Pain in my face

    Hi Tazza, well, every pain can be linked with fibro, because fibro can make old pains come up & start up new ones, and praps the other way round: the more pain ridden a person is the more likely they are to get fibromyalgia. But as I said in my 3rd from last post in this thread I've come to...
  19. J

    Documentary on fibromyalgia made by me

    Love where she describes how people got curious, she got pamphlets for her colleagues and also left them lying around at home, and her husband read them "when she wasn't looking" and they all started realizing she's not lazy... LOL
  20. J

    Frustrating Appt with Rheumatology

    Well that sounds very much more like my story than anything else I've read so far. :)By comparison it would mean getting a second opinion or getting a new one ...
  21. J

    HEADACHES

    Hmm, I've had lots to do with IBS, wind, osteoarthritis in the neck, costochondritis ... but not so much 'head'. If the osteopath isn't helping much there I'd start looking for a new one, because I'd think good osteopaths can help you, unless you can get something like (ear-)acupressure, my...
  22. J

    Frustrating Appt with Rheumatology

    All's "well"... - Believe it or not, this is always how it has to go... :-/ They can only decide if it's (perhaps) fibro if they first prove it isn't rheumatological - meaning inflammatory - or anything else - meaning they might send you elsewhere to exclude other things. If you want a detailed...
  23. J

    What is this? Pain in my face

    Hmm, I tried to halve my last post, but got just outside the 120min edit limit... But this is 'moan, complain and vent' and that's what I turned out doing, for a change... :cool: Now I still want to specify things, if only for myself, because I haven't really got my head around what's changing...
  24. J

    What is this? Pain in my face

    Hehe, I assume you're oozing with irony, TJB... I know a few therapists who actually at least claim they can and *don't believe that they are talking about real fibro-patients. An example is liebscher-bracht.com who claim you just have to do their exercises. (Which a lot of people here think are...
  25. J

    What is this? Pain in my face

    A few months I kept asking myself and others: "Is that part of fibro?" Now I'm not the least interested in the answer any more. What I want to know and keep finding out successfully is: "What behaviour can stop it?" Takes a lot of observing and self-discipline and motivation to want to get...
  26. J

    EMG IS FINE SO ???

    A pain doc prescribed me Tilidine altho she knew I have focal seizures...! Never had such a startling one as on that day... Her Amitriptyline also caused more and more seizures in the long run, that was the last straw, the "8th" adverse effect.
  27. J

    Documentary on fibromyalgia made by me

    First time I've watched people talking about it, although there must be quite some stuff on youtube. The interviews of an ex-CEO-personal assistant in this video are completely realistic and could have come straight from my heart. Thank you for this, Sisyphus!
  28. J

    Smelling smoke constantly.

    Interesting! Mine is aphasia because of cortex left-overs in my speech centre...
  29. J

    Do i have Fibromyalgia and what do i do if so?

    You're welcome. OK: then apart from more exercise you could try hot or cold pads or showering...
  30. J

    Back Pain Management

    Strange appearance: Why "$"? - Spam, scam or not? But I can find no harm anywhere in or under the videos. I've tried the glute bridge exercise(s): OK for problems in the lower back, might integrate it, but by far not as spectacular as suggested. (Praps the first is looking for clicks, it has...
  31. J

    Constant ache/pain in legs/feet w/ sudden onset

    I wouldn't be thinking at all about fibromyalgia yet after 5 days! But I'd try hot or cold pads or showering for the ache, pain, fatigue, sleep and IBS in the meantime. If you keep that short that shouldn't make it worse. And read around/ask for things that can make you get to sleep better...
  32. J

    New to forum/Just diagnosed

    Not sure why you are specifically asking about a nutrition specialist but instead or parallel you can do all the stuff sunkacola suggests about diet. When you've got to know yourself that well, they won't be able to help you much other than say the same... Having said that, I wouldn't've known...
  33. J

    Do i have Fibromyalgia and what do i do if so?

    Hi Mark - Normally, apart from agreeing with the others, I'd be suggesting things to try out while waiting for the docs. I find it hard with this symptom. Pinpointing it more closely could help you *and the docs tho, so here's some suggestions to think about & try out: Is it never at daytime? Is...
  34. J

    Neck pain

    My osteopath and my acupressurist have got my neck a lot better... Additional neck stretching exercises were hard, have to do them gently and a lot less than others.
  35. J

    Cymbalta

    I('d) prefer gentle PT/yoga exercises, osteopathy & cryotherapy...
  36. J

    Chronic abdoman and pelvic muscle tightness

    Sounds like a visceral osteopath could help make them more supple...?
  37. J

    Community forum update

    "Jump to new" is new I think? Great! Have you summarized the user-relevant updates anywhere?
  38. J

    Symptoms

    Ah, good to know, I've known it for 40 years, so I'd thought it's not just European... (Ehm: Would everyone know that wp = wikipedia? I'd better stop using all abbreviations I spose...)
  39. J

    Nausea advice

    Well, as we've said, you could do a lot to prevent it come up. So I'm not sure what kind of suggestions you'd be willing to try... ;-) Getting rid of it is always much harder and more tedious than preventing. But a hot water bottle for starters and various herbs...: Where I live a lot of people...
  40. J

    Nausea advice

    No, most of mine didn't, neither docs nor PTs. But they all think they do, until I educate them. The rheum. who diagnosed it just said "exercise" and Metamizole, which I didn't tolerate, others just called it a symptom-dump. But a few read up or show understanding, and 1-2 are helping me...
  41. J

    Struggling to wait for answers

    OK, I'll have my go on this... Not sure how many specialists you've tried... I've grouped vision and vertigo with dizziness etc. cramping in back: lying down a lot more/often, with gentle but increasing back / yoga exercises 30 mins per day (3x10?), praps with the help of a good PT, , heating...
  42. J

    Symptoms

    I'm not sure it's clear: autogenic training is not exercise, it's a relaxation technique (cf. wp), using mental imagery to feel heavy, warm, calm. Progressive muscle relaxation (cf. wp) is easier to learn but I find it increases pain on bad days if I clench muscles before relaxing them.
  43. J

    Symptoms

    I need to do more - works best for me: - autogenic training to keep my blood pressure and heartbeat down, my doc's reminded me... As in your case it is usually normal (at least with meds.), but it can go up and away quickly in certain situations, not necessarily stress.
  44. J

    Struggling to wait for answers

    Whatever it is, pinpointing your symptoms with the help of PTs and developing your own ideas might help. You might like to share them and ask for our ideas...?
  45. J

    New to forum, hello :)

    Oh how I know all this: Being kept or made awake by pain & ruminating... going to bed earlier... needing more sleep... I'm so successful getting a lot of the fibro down at the moment, but I still need 8,5-9 hours of sleep, often starting at 9 or 10, and still wake up about 6 times. But I've got...
  46. J

    Looking for answers

    Hi there... ;-) My short-term ideas would be: trying teaching standing, at least partly; that's what I do - use a rotating and adjustable bar stool, which you can stand, half-stand and sit at. (My table is a stand/bar table.) Lie down or walk around in each break. Add short breaks in between? Do...
  47. J

    help

    When I'm not feeling well & up to crowds & bumpers, so mostly, I don't hide my pain or fog over my weakness, I keep to the sides, walk slowly, pause, remember to do small relaxing or stretching exercises, allowing myself to flinch, put my hood over my head, walk (& cycle) 'defensively', let...
  48. J

    Awaiting Diagnosis

    And/But for me, targeting each single symptom has been much more important & helpful than the diagnoses, which help (that) tho...
  49. J

    head and jaw

    Opposite here: I thought it was my trigeminus, perhaps with a stress-component, but it was two root inflammations. They have been/are being treated and even now they sometimes react to stress a little bit. But nothing like before! I wonder whether they caused some of the fibro-pain too or...
  50. J

    Hypersensitive to Smells and Tastes

    Hi - that's one of the symptoms I don't have, altho I keep reading about it as typical. My hyperacidity and gut would prefer me to have it. ;-)
  51. J

    CBD oil experience

    Still on 3x3mg in the evenings. Sleep ist quite OK, long & only 6 short breaks. But I'm still tired in the day, I haven't got my usual energy, or is that the cold weather?, and my focal (= small) seizures are going up. I know cannabis is used against seizures, but if I get another 2 seizures in...
  52. J

    Degenerative Back pain with a bulging disc and Fibromyalgia

    Thanks, I'll remember that. I'm also practicing at the moment, by testing going to work for 30 mins. per day, today and probably tomorrow. Today I had loads of friendly faces, one person who got on my nerves with the length and breadth of his talking, afterwards it "all" felt very feverish/ill...
  53. J

    Degenerative Back pain with a bulging disc and Fibromyalgia

    Your Qi Gong encouragement made me try it lying down. In a table tennis break. But just holding my arms straight up was so helpful that I did the same with my legs: LEGS UP. (Yes, my mate is ... fairly ... tolerant... ;-), considering lots of people walking by with or without kids). First...
  54. J

    Symptoms- recently diagnosed

    Wow, that's a new one to me, I'll definitely look into that. Not just to get my hair longer, it's pretty long for a male anyway... ;-)
  55. J

    Symptoms- recently diagnosed

    This is the most helpful video I've found:
  56. J

    Degenerative Back pain with a bulging disc and Fibromyalgia

    Hmm, thanks for the suggestion, Dbg. A little bit of movement is not the question of course, I move, exercise, do sports a lot of every day, table tennis, 7 min. scientific workout, cycling and weights. But what you are suggesting is trying just a little bit of Qi Gong, praps 3x1 minute in one...
  57. J

    I'm scared this isn't fibromyalgia

    Yeah, first I wanted it to be fibro and was scared when it wasn't, esp. cos the tests for ankylosis spondylitis showed a tumour in my spinal canal (which isn't growing, it's turned out, and is probably harmless, so I'm leaving it in until that changes). But then I thought certain symptoms like a...
  58. J

    Misdiagnosed with Fibromyalgia?

    I agree, after my first rheum. didn't diagnose fibro, but the second one four months later did (I'd made both appointments at the same time, the second one locally). Then still partly dissatisfied I've checked each single pain area, meaning 25 specialist-areas, plus a centre for rare diseases...
  59. J

    Symptoms- recently diagnosed

    Hi SammieBee: I've always shed quite a bit, that hasn't got worse. Itchy skin I've always had and need to keep contact with water, soap and synthetics to a minimum, then it's no problem for me. For my racing heart beat I measure blood pressure and pulse and do the Wim Hof breathing exercise and...
  60. J

    Newly diagnosed

    Hi Tori, I've got my very itchy skin under control by only very short water contact, sensitive soaps etc. only where absolutely necessary, no lotions etc., no synthetic textiles, almost only (organic) cotton. I'm getting the feeling it's altogether a "sicca" problem, since by new diagnoses I'm...
  61. J

    Trying to cope with fibromyalgia

    Funny, I was watching a one hour philosophical dialogue with an awareness-specialist on Tuesday, then yesterday suddenly recognized his name as the author of your book-recommendation: Jon Kabat-Zinn...! I'm sceptical, having been disappointed by "Freedom from Pain" by Peter Levine, it was like...
  62. J

    CBD oil experience

    Betting on taking the CBD oil, like you'd've done, was the right decision! *beam* So it was just the meridian activation. I slept almost 10 hours, really! slept!, excluding the usual 6 pee-breaks (drank more/in the evening, cos of the headache). Then dozed another 3x15 mins (never nap during the...
  63. J

    Degenerative Back pain with a bulging disc and Fibromyalgia

    Thanks, sunkacola, really comforting words, even just knowing that I'm not the only one with these extremes (with Affinity too). That helps my self-acceptance too. What's lurking in me there is having been at work, going back in baby steps in a month, and knowing there are 100s of people gonna...
  64. J

    CBD oil experience

    Bad night, then increasingly bad day - CBD couldn't be the reason, could it? My acupressurist tried something new yesterday, meridian activation, my skin and back went continually worse, thought the night would get difficult, so I took 3 drops of my new high quality 10% CBD oil after taking 2...
  65. J

    Adrenaline?.

    You say "no reason" - maybe if you keep a record of what you did before, you can find a "reason" which you aren't used to accepting as one....?
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