How do you cope?

Edit

Member
Joined
Mar 3, 2021
Messages
14
Reason
DX FIBRO
Diagnosis
03/2020
Country
AU
State
SA
Same tea is my thing now .i do like coffee but the effects after isn’t worth it I bought decaf see if it will make a difference I drink green tea too I like the calming effect . ooh depression is horrendous I cope with it better now yes the forums a good little bunch ok hope you have a good day too 🤗the
 

Edit

Member
Joined
Mar 3, 2021
Messages
14
Reason
DX FIBRO
Diagnosis
03/2020
Country
AU
State
SA
the green tea has caffeine in it or like a decaf coffee not caffeine in it?
 

Auriel

Distinguished member
Joined
Jun 8, 2021
Messages
140
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Hi edit hope your ok , there’s 2 choices for green, decaf and caffeinated anything with caffeine in it winds my fibro up even chocolate and it’s so annoying cos I like chocolate ( understatement).
 

Edit

Member
Joined
Mar 3, 2021
Messages
14
Reason
DX FIBRO
Diagnosis
03/2020
Country
AU
State
SA
Hello Auriel!
I am Ok at the moment except my right shoulder is aching like hell. I had a calcium deposit removal operation about 15 years ago, maybe that will be the problem again. I am sick and tired, if I feel a little bit better something piece of s..t is coming up;-((((
Thanks for the info about the teas, I like tea very much, I was a coffee drinker but lately the last 2 years I am drinking more tea than coffee. I understand your feeling about chocolate, I LOV LOVE chocolate and cakes etc... but because my fibro ant Type 2 diabetes not really can have it. I allowed to have dark chocolate but it make me a migraine. the milk chocolate is not very good for me. sometimes I wondering when I was young ia had so many lovely cakes chocolate and sometimes I am craving so badly. My sugar level is OK, but I am on metformin . take care, what kind of weather have you in UK? we have winter here this is my favorite time of the year. I hate the hot weather and South Australia has the most hottest and driest summer in the whole continent.
 

Auriel

Distinguished member
Joined
Jun 8, 2021
Messages
140
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
It’s quite a nice day sunshine ( we don’t get it often) I’m the same with dark 🍫 migraine not long follows after 😖 I’ve a ridiculously sweet tooth , did you have a parathyroid problem ( I read before about calcium deposits and it was one of the causes) interesting , hope your shoulder gets better soon x x x
 

Warbucks

New member
Joined
Jan 3, 2015
Messages
6
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
New York
We all go thru the same thing seeing doctor after doctor only to find out that little is known about fibromyalgia. There are only three drugs for the disease and they only work on about 15-20% of those that have fibromyalgia. The rest that we are given is just guess work. I am 81 and was finally diagnosed with it 15 years ago. I have terrible pains in every bone when I lay on my bed for 2-3 hours then have to get up. the pain is especially bad my lower back and little helps. The flare ups are the worse caused by stress normally. If something is bothering you then do not be afraid of speaking out here. Good luck!
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
491
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
You can also explore exercises to release your muscles. My therapist got me to do body scans where I connected with and then consciously relaxed each muscle one at a time, from my feet all the way up to my head - this works best for me lying down.
That's called Progressive Muscle Relaxation (PMR) (Jacobsen).
Or just do a body scan alone, not judging or changing any pain that might be there, just saying 'hello' to each part.
Or autogenic / autogenous training - helps me best, but it's praps a bit more advanced, takes a bit of practice some say (I find it easy and it was the first I was taught in my youth as an easy basic meditation form).
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
491
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
There are only three drugs for the disease and they only work on about 15-20% of those that have fibromyalgia. The rest that we are given is just guess work.
Not quite sure which of the 40+ drugs for pain, sleep, depression & anxiety that work for some fibromites you are referring to, Warbucks? Praps gabapentin, pregabalin, plus low doses of amitriptyline, nortriptyline and duloxetine are the most common? The figures usually quoted for these meds are 30%, but I can imagine it being less really. If we compare all those to the other things to take (30+ supps & 10+ herbs) or do (pain management, physio, diets...) I spose the med parts is just as much guess work.

I have terrible pains in every bone when I lay on my bed for 2-3 hours then have to get up. the pain is especially bad my lower back and little helps.
Oh how well I know this! For months I thought it might not be good to improve my sleep too much, so the pain afterwards isn't bad so long.
What have you tried? What does help, what doesn't?
I managed to get that bed pain down with a soft topper, lambskin under my thighs, pillow under my hunchback for a while, then a pillow wedged diagonally half under my face to be able to sleep face "down", while twist-stretching to get my lower back unrest and pain under control. Plus yoga back exercises, esp. for the lower back, osteopathy and since 8 months esp. my acupressurist, who focusses on one pain area at a time, esp. thighs and lower back. At the moment my supps are improving my sleep intensity considerably at last, up only 4x3' quite often now and back to sleep quickly, not even dozing or doing relaxation exercises. For lower back I twist stretch in bed or while up, often curling backwards is enough, sometimes added pressure by pressing my feet against the wall next to my bed while lying on my belly.
The flare ups are the worse caused by stress normally.
How are you managing to control your stress?
Most of my flares have almost nothing to do with stress. But I do have the stress under control anyway. And am doing therapy just to make sure, seeing as I've got my doc appts down. I've sorted out the triggers for my flares by pinpointing using diaries and now I can usually sort them out inside of hours or days using what I write in my fibro blog. My biggest fibro triggers were overdoing it, as well as treatments that harmed me, incl. rheum./pain clinic, so I'm glad I'm rid of all meds etc.. (Some supps & herbs caused a bit of harm, but quickly reversible) Then comes talking thru mask and too long live social interaction. After the supps taking my blood pressure down as sfx, I'm even tackling my blood fat meds at the moment, as my strict diet shd actually be enough for that. And fine-tuning pacing more and more to control how far I overdo things if at all.
 

Jemima

Senior member
Joined
Jul 30, 2020
Messages
217
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Most of my flares have almost nothing to do with stress. But I do have the stress under control anyway. And am doing therapy just to make sure, seeing as I've got my doc appts down. I've sorted out the triggers for my flares by pinpointing using diaries and now I can usually sort them out inside of hours or days using what I write in my fibro blog. My biggest fibro triggers were overdoing it, as well as treatments that harmed me
That's a really interesting observation, JayCS. Fantastic that you had the insight to recognise that your treatments were counterproductive.

When I think in terms of stress, I don't strictly look at is as stressful occurrences - e.g. from difficult interactions, financial, work pressure etc - but rather anything which triggers a stress response within the body and brain. Self observance and tracking is so useful for identifying what alters our state of wellbeing over the course of any given day. I hadn't realised how much this had changed for me since my fibro problems got really bad until I did the work of analysing what was going on, and I don't think I was anywhere near as organised as you are about these things! Thanks for sharing your strategies - it's so valuable!
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
491
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
That's a really interesting observation, JayCS. Fantastic that you had the insight to recognise that your treatments were counterproductive.
A learning process of course. But I had become a bit of an expert for my own body before fibro already. Just the sudden onset of something new surprised me, so I sometimes tried things for much too long a time at the beginning, like 9x acupuncture, painful for (only!) me....
Hardest was in the clinic, wanting to try out everything they offered, altho 70% was bad for me and mattress, snorers & food were a bad foundation.
When I think in terms of stress, I don't strictly look at is as stressful occurrences - e.g. from difficult interactions, financial, work pressure etc - but rather anything which triggers a stress response within the body and brain. Self observance and tracking is so useful for identifying what alters our state of wellbeing over the course of any given day. I hadn't realised how much this had changed for me since my fibro problems got really bad until I did the work of analysing what was going on, and I don't think I was anywhere near as organised as you are about these things! Thanks for sharing your strategies - it's so valuable!
Ah OK, yes, dead right, every "trigger" is "stress" in that broader sense. But then I prefer to just call that "trigger" in normal terms. Whilst thinking of it as stress does help understand how triggers work, they "overstrain" our oversensitivities. This demystifies and clarifies the word trigger and shows how the oversensitivies of (or increased by) fibro are actually showing us how to self-care better, not overstrain ourselves or let ourselves be overstrained by events, people, even perhaps things like the weather. This can also help us try to see it as a normal life under a new flag of new levels of overstraining ('stress'). Of course it's 'normal' to say it isn't normal, and once in a while it's better to do so, for mental hygiene, but if we make it a continual habit I think it makes it worse for most, not better. Ah, a kind of radical acceptance again...
Thanks for the encouragement, as ever! :D (I think I'm safe speaking on behalf of us all...)
 

Jemima

Senior member
Joined
Jul 30, 2020
Messages
217
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Beautifully said - that's such an articulate way of putting it!
 
Top