How do you cope?

[Edit]

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]

the green tea has caffeine in it or like a decaf coffee not caffeine in it?

 

[Auriel]

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]

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]

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]

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]

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).

 

[Jemima]

That's called Progressive Muscle Relaxation (PMR) (Jacobsen)

Yes, exactly!

 

[JayCS]

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]

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]

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! (I think I'm safe speaking on behalf of us all...)

 

[Jemima]

Beautifully said - that's such an articulate way of putting it!

 

[Warbucks]

JCS those meds you note are off label meds not recognized as being specifically for fibromyalgia.I am sure everyone knows the three recognized meds that are used to treat fibromyalgia.

 

[JayCS]

JCS those meds you note are off label meds not recognized as being specifically for fibromyalgia.I am sure everyone knows the three recognized meds that are used to treat fibromyalgia.

Hmm... interesting that you should assume that, Warbucks!
For anyone else like me not in the US, or just new to this, I've had a look at this terminology more closely:
I've now noticed that you live in the US and remembered that I read of your FDA regulating this and approving of Lyrica first while working on the glossary of a UK fibromyalgia site which explained that a bit.
So I searched for <"drugs" approved for fibromyalgia>. That word always confuses me, thickening the plot... And it's not just that I am German - if I look up drugs on the NHS site I am told it means things like cocaine. Praps the UK people here can help me if it's become normal to call medicine / medication "drugs" in the UK now? Didn't use to be.
Well, the FDA explains: "In June 2007, Lyrica (pregabalin) became the first FDA-approved drug for specifically treating fibromyalgia; a year later, in June 2008, Cymbalta (duloxetine hydrochloride) became the second; and in January 2009, Savella (milnacipran HCI) became the third." Ahhh... Of course I've read of these names on the forums, but only alongside the '40' others I referred to and it's never been specified that they are the only approved ones.
I've also now looked up "off-label" on wikipedia - that refers to using prescription drugs in a non-approved way as well as OTC = over the counter drugs, i.e. some that do not have to be prescribed. And above the article it gives me support by explaining "The examples and perspective in this article deal primarily with the United States and do not represent a worldwide view of the subject."

BTW none of these 3 were suggested or prescribed for me here in Germany, despite being treated by 2 orthopedists, 7 rheums, 4 pain docs, & 3 psychiatrists (5-6 different pain meds tho) and I'd only heard of someone taking duloxetine here for FM & depression. Same goes for the other fibromites I know here. And neither Germany nor the UK (NHS site) has these as the only three or the big three, and from what I know about the FDA and medical / fibro research, plus the fact that nothing seems to have progressed there for 12 years, I doubt it's justified, which you may agree too.... So I still can't follow you saying "there are only 3 drugs for the disease".
So thanks ;-> for your US assumption - now you've made me learn a lot of things for the glossary and for my treatment reference list....

 

[Jemima]

if it's become normal to call medicine / medication "drugs" in the UK now?

I'd say It's pretty normal to say "prescription drugs" or "drugs" in the context of a particular treatment in the UK now, alongside the term "medication" itself - although, without the context, people might assume you're discussing something illicit for the weekend!

JCS those meds you note are off label meds not recognized as being specifically for fibromyalgia.I am sure everyone knows the three recognized meds that are used to treat fibromyalgia.

It is of course important to remember that those of us outside of the US are not under the scope of the FDA, and so may not be aware of your experience there. Approved medications are not always the same in Europe and elsewhere in the world. For example, amitriptyline (Elavil) is approved and widely used - often first - to treat fibromyalgia in the UK and on the European continent.

It is also normal here to use the generic drug name (e.g. duloxetine) rather than the brand name (in this case, would be Cymbalta) when describing medications. Cheaper generic versions of most medications are usually available to buy, so only those who can afford the price hike and like the idea will reach for the expensive branded product. We just don't use brand names in conversation in the same way that you guys do on the other side of the Atlantic! I think cultural differences are always so fascinating