How do you cope?

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JayCS

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Thanks for explaining, esp. about the brand names, that's also something that often confuses me! Also interesting between UK and Germany (said it before I think) that often/usually(?) "OTC" meds, ehm drugs? Or not drugs? are not paid for by many German insurances, even if prescribed. Simple examples: Aspirin (cheap) or vitamin D (not so cheap) And are these "drugs" or not?. No idea how that's done in the US?
 
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Jemima

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Thanks for explaining, esp. about the brand names, that's also something that often confuses me! Also interesting between UK and Germany (said it before I think) that often/usually(?) "OTC" meds, ehm drugs? Or not drugs? are not paid for by many German insurances, even if prescribed. Simple examples: Aspirin (cheap) or vitamin D (not so cheap) And are these "drugs" or not?. No idea how that's done in the US?
I'd say that aspirin would be described as a drug, but vit D would always be described as a vitamin, as would various multi-supplements. I'd guess the difference is perhaps to do with whether the substance was originally patented?

Licencing laws for complex combinations of vitamins, plant extracts, and minerals are much more relaxed in the US than here in Europe (obviously I'm not from there, so knowledge is limited, but I used to work for Wholefoods - who couldn't import most of their product range to the UK because of EU restrictions) so the "vitamin" industry is more of a behemoth in the US. As for terminology, I think it gets pretty nuanced, so that's confusing!

A shame your insurance doesn't help you out with OTC meds. Here, with a prescription, we get a discount.
 

JayCS

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you're discussing something illicit for the weekend
That's why addiction therapists here know exactly what pregabalin is used for, when I mentioned the name; not just "benzos"...
Grown to the 5th most recreationally used drug in Munich.
 
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Jemima

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That's why addiction therapists here know exactly what pregabalin is used for, when I mentioned the name; not just "benzos"...
Grown to the 5th most recreationally used drug in Munich.
Yikes ...and the terminology waters get even muddier!
 

Badger

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It's incredibly sad to hear of the harrowing experiences of others here and a clear reminder of the toll Fibro takes. With the stress of living with it, if anything else comes along it knocks you down. There's some great advice here and a pragmatic honest view acknowledging it's something we have to manage. That can take different forms and it all pays in to living with FM. I've found it can be the difference between feeling rough and feeling overwhelmed.

My Fibro started in my teens, I'm 42 now and have ended up learning the hard way. Although pain and fatigue gradually got worse it's because of mental health issues that I missed out on a great deal. The many injuries collected over the years still hurt and some have had a big impact. From a active youngster to an adult who either had to miss out or quit most things or milestones.

It's a vicious cycle compounded by anxiety and depression. Such a shame it can sour relationships and become isolating thanks to hurtful attitudes of others. It's been two years since mum died of pneumonia. I cared for her at home for ten years while she suffered from Parkinson's. It's almost a year since my older sister took her own life too. She suffered with anxiety and depression in the last few years which steadily deteriorated after being diagnosed with Parkinson's age 48 in 2018.

As I told her after mum died I don't want to make the same mistake after dad died of cancer in 97. The hope was telling her that I'm trying to come to terms with everything and move on would help but nothing seemed to make a difference. She was very fragile and we couldn't get help during lockdown.

Hopefully some of what I'm doing is worthwhile although it's hard to tell. Then again Fibro fog and side affects of Pregabalin make it difficult. I feel flat and absent minded but it does at least calm down the awful nerve pain in my forearms.

I'd tell anyone newly diagnosed it's vital to learn about Fibro, pace yourself physically, treat mental health with the likes of meditation and reaching out to other sufferers. Also being sensible with sleep and diet. Living with fibro is hard enough without making it more difficult.

I met one of my best friends at a pain clinic in 2007, he's lucky to be alive let alone standing up after an industrial accident. He's suffered with arthritis in the spine and hips amongst other things ever since. More recently he was diagnosed with diabetes and fibro. Seeing him try to move on with life has been a push for me. He's a true gentleman on a glass half full kind of person who deserves to be happy. I'm grateful that he has grandchildren to lift his spirits.
 

Jemima

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I'm so sorry to hear about your sister, Badger. Losses of this magnitude can take the mind already battling depression and anxiety to breaking point, so it is both inspiring and humbling that you remain so reflective and driven to hold onto hope. Your friend from the pain clinic sounds like real gold - the glass half full types can truly be lights in the storm! Mental health issues can mean rough seas indeed - I relate so much to the sense of time lost and moments passed by. I hope you find space to create beautiful moments in the future, and that they gradually eclipse the feeling of loss that shadows what's already behind you 🌷
 

Badger

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I'm so sorry to hear about your sister, Badger. Losses of this magnitude can take the mind already battling depression and anxiety to breaking point, so it is both inspiring and humbling that you remain so reflective and driven to hold onto hope. Your friend from the pain clinic sounds like real gold - the glass half full types can truly be lights in the storm! Mental health issues can mean rough seas indeed - I relate so much to the sense of time lost and moments passed by. I hope you find space to create beautiful moments in the future, and that they gradually eclipse the feeling of loss that shadows what's already behind you 🌷
Thank you very much, after a lifetime habit of bottling things up I'm grateful to speak my mind and still have time with the close family and few friends I have left.
 

sunkacola

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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.
There are many different medications (or, drugs) that are specifically recognized and prescribed for fibromyalgia.

There is no one (or three) which are recognized as being useful for all or even most people who have fibro. So in that sense, there are no drugs that are "for" fibro or that "cure" fibro, or you could even say there are no drugs that "treat" fibromyalgia because there's no drug that makes it get better!
But there are many medications, both prescription medications and over-the-counter which are prescribed and are used as treatment for fibro pain. You can "treat" the pain, because some pain medications lessen the pain for some people. But you cannot "treat" the syndrome, or make it better, with drugs at all.
It depends on where you live and what doctor you see what drugs are available in your area, or what drugs your specific doctor is able to or is willing to prescribe for you. For instance, where I live only a "pain specialist" can prescribe opiates. In other places, drugs that are commonly prescribed here are not legal at all and vice versa.
 

Badger

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I find Pregabalin makes Fibro fog worse, it's troubling me more the last few years. Difficult working around it. Pressing on seems to make things harder with this blind spot, trying ease off and relax into things still leaves one feeling incredibly foolish.
 

JayCS

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I find Pregabalin makes Fibro fog worse, it's troubling me more the last few years.
I need a clear head to recognize my symptoms & find what to do, for self-discipline etc. - my prerequisite #1 now for anything I take.
Med/supp zombifying (drowsy, numb in head) is worse for me than Ache, pain, insomnia. Slowly increasing sfx make the decision harder.
Amitriptyline did it to me 'slowly', and only when 7 other sfx slowly increased did I pull the plug, after 4 months - much the better for it.
But anything zombifying me now (like melatonin & 1 sort of CBD putting me on sick leave) I'm very wary of & only give it 10 days to tone down.
Adding theanine to GABA + glutamine is surprisingly making me alert & needing less sleep, balancing for effective sleep is a precision job tho.
 

Badger

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Yes it can be tricky getting a better night's sleep, it was a battle getting used to Amitriptyline but it does help me sleep. Cognitive effects and constipation with Pregabalin are off-putting but it does calm down awful forearm nerve pain. Hopefully I can stick to a more sensible routine in future. It sounds like you are being very responsible in managing symptoms.
 

Gardener

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I was diagnosed with fibro last month after 6 years of struggling with symptoms (since I was 15). I had thought that finally with a diagnosis, I would find clarity and successful, straightforward treatment. As soon as I was diagnosed, the first thing I did was try to learn more about the condition, but it feels like there's not much to learn besides "there's a bunch of symptoms and it sucks and often doctors won't take you seriously and maybe it's in your head!".

I've already struggled with depression and anxiety, and I feel like it's just my luck to end up with a condition that has next to no answers. This knowledge has drastically affected my mental health that has been holding on by a thread for so long. I feel so lost. I've lost so much of who I am. I can hardly manage my relationships and my husband just seems so tired of it all too.

I always told myself that if I wasn't thin or pretty, at least I was physically strong. When I lost my strength to this illness, at least I was smart. Now, I struggle with cognitive symptoms and I've lost that too. I don't know how to stay positive anymore.

For those of you who have managed this for a while, how do you do this? Does it get better?
 

Forgetmenot

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Hello sweetie ,well I’ve had fibro for years ,my daughter has had it for 3 years now.she’s only 19,it’s something you learn to live with.that might sound a simple thing to say.but it’s the best advice I can give you,
You will also learn that thin and pretty fat and ugly means nothing to the right person,took me 30 years to meet the right man who sees me and not my illness.
Now you need to listen to your body and learn what you can do and what you can’t,you need to work with a good dr on meds that will help you to have a life,your life isn’t over at all never ever think that,it’s just different.like millions of ppl who find themselves in wheelchairs or other illnesses they find a way.And so will you.Don’t except it to happen over night ,it takes time ,Of you every need a chat pm me .But there are amazing ppl on here who do understand everything your going though.
 

Auriel

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Hi gardener, I also experienced the ‘all in your head’ attitude in the beginning + felt so ashamed I didn’t discuss it with another dr for years + then I was diagnosed. I just learned to accept my limitations what I can/ can’t do + that took a while+ also rest when I feel super fatigued ( like now, didn’t sleep well last night) but having a condition doesn’t or shouldn’t change who you are(that’s how I feel, I’m still me) just aspects of my life and abilities have change a lot and I’ve had to just work around them, I hope your day is well ( despite the fibro symptoms) 😙🤗💛
 

Auriel

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Hi jem’s, just saying a quick hello, 😑 💤 had terrible sleep last night awake till 5 had a zoom meeting today I’m training for something and thought the subject matter was gonna distress me but it was good went ok 💘💋💞
 
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