Hi Lemon - just a few ideas of mine, my tuppence worth...
worst is my sciatica and headache that won’t ease up. I’m just sick and tired. Literally and also of taking cortisone all the time to pull it together a little bit. Any advise? Nothings working. I used to have extreme shoulder pain and low back, that’s mild for now (knocks wool). My ankle and hands also hurt.
Trying expert physio could help with sciatica, headache: maybe neck?, ankle & hands. As a workaround doing careful versions of exercises for these on youtube. What helped your shoulder & low back? Isn't sciatica low back too? (Personally cortisone is one of the things I'll never take if I'm in my right mind, however the pain, cos of the many sfx...)
cup of lemon tea
and dropped it everywhere, as I tend to do. My hands just lose their grip and strength, I’ve been unable to open anything for months
Like with any tendency to fall, praps prevention and alleviation may be a bit of a workaround for the dropping. I don't have it all the time, but had to test this yesterday evening due to jab-effects as I wasn't able to carry anything longer than 1'' (second). We always end the day with a 10-20' game of cards, so I rested my hands on the table almost all the time & threw the cards with my fingers. Well actually I cdnt sit any more, so we got on the floor and it was on a tray with a box under it. For drinking or eating I'd use both hands & even rest the cup or plate on a box while taking from it, if need be.
As I did have one second and my loins are OK at the moment, I could get my (now 5 pairs of) socks & trousers off myself standing, each with a 5 second rest in between. Took a while, sometimes a 2nd or 3rd attempt.
But I always try to do the maximum of what my body allows - except when carrying hot tea etc. ;-D - there I preventatively do a lot less.
My ability to get things open has decreased a bit of late, even before the jab. Knowing this "the Nikolaus" on Dec 6th "brought me" a hand exerciser which I'm now using several times a day. I also have another which I'll have to get out again. I'd offered a neighbour to put a better light bulb into a lamp outside the house the other day, but I had enough difficulty feeling safe on the ladder for 3 minutes, and could only get one of the screws out, so left it half-done, like a similar light problem a few days before. There will come a day when I can manage it better, or it won't and I'll do something else instead...
can’t bear sitting in my car for the commute.
This seems to be fundamental for progressing. Where we live, I can get almost anywhere on my bike, which hurts me less than anything else, esp. sitting in a car. When I do have to, it's only because my wife wants me to come with her somewhere. As she drives with a leadfoot it often hurts, so I put the back of the seat down & lie down and maybe cushion myself, twist-stretching to reduce the pain; but as you say it's your car that means you drive yourself so that won't help,:... so: Praps you can get someone to drive you?
I can’t do expensive supplements right now, everything has such inflation.
Supplements can get really expensive, but quite a few of the ones recommendable for FM are fairly cheap... Learning to encapsulate yourself makes it cheaper, might be OK for your wrists in short stints.
natural and less chemicals as I’ve always tried the more natural approach but find I do have sensitivity and allergies and other things.
Sensitivity & allergies to herbs & supplements? I've had them too, but a lot less than to medicines.
I feel like if it’s only flared that go away then why do we need long term high doses that would make it dangerous? Can’t short term work of flares are actually short term? They’re not are they. They are chronic and feel progressive.
I know what you mean! That's why I don't take anything dangerous any more. Especially as my fibro has been in one long flare for 2 years now, and I can only be active a bit by doing lots of things to keep it down. For some people flares are fairly short term, and I do also have flares of a few days inside of this continual flare. Flare is only a relative term for the
amount that something has got worse, not necessarily for the time it has. To use the image correctly I should say I'm in a blaze, with loads of firepersons (= supplements, my acupressurist, exercises / stretching) working at keeping it under control all the time, and yet sometimes a trigger makes it flare up even more all the same. I'd think that's what you mean by chronic? But there's enough of us who have less of a blaze going on. As
@sunkacola said it's not of itself progressive - after a certain build up it's usually only age, co-morbidities & not doing anything about it that make it progress.
I don’t understand getting x rays yearly for pain what that helps.
I don't either, I'd stop them. Just for jaw inflammation I've been needing several x-rays. And yearly MRIs to check if my (probably harmless) spinal tumour is growing, which it isn't.
my ana was slightly elevated and rheumatologist brushed it off as it can normally become slightly elevated, and that’s normal.
I agree with your rheumatologist. Fundamental bloods every one of us should get checked regularly are B12 and D3.
And as part of the diagnostic process generally "all" your bloods, e.g. by a rheumatologist (esp. CRP) and an endocrinologist (hormones) and then a general big check every 2 years. I also needed to make sure my allergies, kidneys are OK once, and need to check my lipids very regularly.
I’ve been seeing so many drs in the past decade or so but feel like a lost goose that the doctors aren’t caring to find.
I've been to 50 in 2 years, but I don't see myself as the goose and them as my gooseherds, after realizing in my twens that most doctors have no clue of my body and only some a little (or occasionally a lot, but only 'their bit'). I'm obviously (still) not a total master of my body, but as close to that as anyone will get (being pretty sure I would be getting severe jab effects proved it once again). Let's say I'm training myself to become master of my body more and more, and see doctors & physiotherapists as my servants. I treat them kindly and humour them, for what morsels & crumbs they may have to offer me. Maybe their demeanor can sometimes fob me for a minute, but so often have their absolute certainties turned out as sham. I can understand people feeling intimidated, but I'd recommend trying to become self-expert and to self-advocate more and more, learn to explain the unexplainable to people who are miles away from knowing or even understanding, so that they can develop their ideas and praps give suggestions and develop research. (How are they to know if not?!)
I’m allergic to All otc pain meds do that leaves me being very careful what I take.
Same here, over the counter, as well of course as prescribed, that's why I don't take any meds (any more).
I've even managed to convince my cardiologist & GP that my supplements & activities are keeping my lipids, blood pressure and blood flow under control, so I could stop my 5 cardiovascular medicines, altho I seemed to have been tolerating these for once.
A test found me lactose intolerance but I love cheese, just upsets my stomach. I usually have ibs-d anyway so tried a bit of elimination diets, didn’t make much difference.
Lactose free cheese is probably too expensive if you can find it at all? (And tastes different...)
If an elimination diet hasn't helped yet, then I'd think you haven't eliminated enough - did you go down to almost zero?
Or quick check via this video: "Best & Worst Foods to Eat with Irritable Bowel Syndrome (IBS) | Reduce Risk and Symptoms of IBS". This is where self-discipline comes in & making sure of your intention to progress.
But also instead of cheese increasing lactose-free things you love.
They need to invent something to help pain that’s not so dangerous maybe?
I’d rather live not in pain any way looking at it. Mild side effects, well those happen with Tylenol- take it daily and pain level rises at baseline and you need larger doses as it stops working, and allergies can develop as well, to even this.
Well, the way research & pharmacy is going, I'd say they are continually developing less dangerous medicines.
But pain is a hard nut to crack. And their aspirations are to satisfy the want for something that helps all of the people all of the time quickly & easily. Obviously that's going to mean the results keeping being dangerous, maybe OK for short term use, often needing further medication to contain the side effects, but not designed for chronic pain. The alternatives we have to keep it as un-dangerous as possible means it's more individual, less reliable, slower and more complicated - hard to get medical evidence for that, but actually for the supplements I'm taking I'm relying only on medical evidence in studies. These are only few, because to measure these slighter effects the studies would have to be really big, which makes them more expensive with less financial reward. So instead of them putting money into this, I need to myself... (The most expensive supplements are the rarest, not necessarily those with the least medical evidence tho.)
A bit of a serious take on something you meant of a bit of a joke, maybe, but I think it's good to become aware of what's behind it all, as this can help our mental hygiene, to accept the situation we are in (and not look for scapegoats to blame, in case we do, as this doesn't help anyone).
*long sigh*
) looking up "sciatica". There's are quite a few old threads that you'll probably find interesting or helpful!
