Fibromyalgia and preventing burnout.

[BitchyVstheUFOs]

I was diagnosed with fibromyalgia a year ago, had it more than two. Not a surprising diagnosis as have had post viral and chronic fatigue in the past. However this time the specialist warned me that it is unlikely to go away and if it does it will only come back. So i have a question. I accept that there are days that I am going to be flat on my back completely exhausted and days when i feel ok but how do i learn not to push and do as much as I feel i am capable / want to do on a good day as to prevent burnout and inducing un-necessary bad days?

I have had a good few days at the beginning of the week, done way too much and now pain levels are higher than the pain killers I have will tame and moving is more than a bit of an issue. I do know that I have various food sensitivities that will increase the pain and have had a few treat days (pizza and cake) which will have contributed but the thing I am really finding hard is the physical limitations. I am and always have been the sort of person that does not know the meaning of still. It is incredibly frustrating not to be able to do stuff, especially when there is stuff that needs doing. So additionally, is there any way that I can learn to address my expectations of what I should be able to and can actually do in this new version of normal life as apposed to what I used to be able to do?

I want to avoid meds as much as possible because helpfully one of the symptoms i have with the fibro is the supersensitivity to meds and foods. Meds often causes more problems than they solve. So learning limits and how to prevent burnout of energy levels where it is preventable will probably be huge for me in managing this. Any help is greatly appreciated.

I shall probably get flamed for this, but fibromyalgia is a symptom, not a diagnosis. By telling you that you have fibromyalgia, your doctor is only telling you that you have muscle pain, which I'm guessing you knew already.

On what basis were you given this diagnosis? What tests did you have done? Were you given the results?

When I was diagnosed with chronic fatigue syndrome in 2009/10 ( three times - once by GP and twice by consultants) I was actually suffering from serious vitamin D and ferritin deficiencies, together with low vitamin B12 and folate and a failing thyroid. Now all those have been corrected, I have gone from someone who hurt all over all the time, who needed a rest after coming downstairs and a lie down after going upstairs and who at times could not sit up without support because of muscle pain, to someone who climbed Snowdon two weeks ago.

You owe it to yourself to find out what's really going on here and you may not get the help to do that from your NHS GP.

i agree with RockinD
you mention food sensitivites - could this be celiacs for instance? blood test is crap for this
also all deficiencies
uk test for b12 is also an unacceptably low version of 'normal'
ditto ferritin and thyroid

there is another thread on general health at the moment about fibro that makes the same points - worth a reas

Can you get onto either a specialist fibro Mangement course or a pain management course? I did pain management last year and we did loads on pacing. Also lots of Mindfulness. It was run at the local Pain Clinic.

It's very frustrating to be limited and it's also worth accepting that you will sometimes make decisions to do things which will wipe you out but do them because you want to. That's called 'sod it'

Sorry forgot to come back to this yesterday as ds has had a sleepover.

Right before diagnosis i was subjected to the following tests:

thyroid function - three times
liver function -twice
hormone level tests
full boods
vitamin deficiencies
x-rays
Hypermobility tests
heart function
(and probably a whole heap load of more stuff but can't recall what atm)

I am lactose intollerant have been since about 10
I am hyper sensitive to artifical colourings have been know to be since 4
I have just been found to be sensitive to wheat
Caffine is a known factor in raising pain levels in a lot of people (there are medical papers on this) and for me if i cut it out generally I am more likely to have a better day
Sugar is a bit problem and I have to be really careful with keeping blood sugars stablised and have found that a low carb high fat diet is generally better for me in terms of blood sugars and pain.

I have a huge heap of suppliments to take that help ensure that I am not deficient in anything, but have little impact on how i feel.

IF i follow all of the above food restrictions but over do the activities (at 1/6th of the level or less of what I used to be able to manage) the i get the following:
It physically hurts to breathe all other possible causes investigated it is caused by the muscles in the rib cage going into spasm more i over do worse it gets, more i rest better it gets
The muscles in my back go into spasm
It feels like someone it trying to shove hot pokers into my hips
I get cramp and muscle spasms in my legs
my arms feel like complete dead weights.

In short it is like having the flu with a really bad chest infection but without any infection. Bloody horrible and literally the only solution is to be still until it calms down. Usually complete bed rest.

sanfairyanne I did read the other thread but as they have ruled out a lot of the things people were suggesting (they were reluctant to refer to speciailist for diagnosis initially and wanted to rule stuff out) it didn't really seem specifically relevant.

Matildathecat I am on the waiting list to see a pain specialising councillor but it is a long wait. The specialist recommended more meds in the mean time but a lot of the pain meds give me really funky side effects and I am reluctant to go down that route when the issue is perspectives predominantly. If I can sort my expectations I hope to be predominantly funky med free even if i am not pain killer free.

Matildathecat could you come back and tell me more about the mindfullness thing please?

Yeah this week was a sod it week, but i think the pay back is that I am going to lose at least one if not two weeks to recover and I am not sure that it was worth it when I suspect that if i had paced myself better I could have managed all and not lost much time to rest. I did have fun but it is hard to remember that when none of the pain killers I have atm will even touch the pain and I don't want to go down the route of muscle relaxants and controlled pain meds. I am fed up of feeling sick from being in pain but trying to pretend I am ok because I don't want ds to remember me always being in pain. He has enough things he can't do because I can't manage it as it is. Also it is not good to scare people by not being able to breathe when i over do it. They don't tend to appreicate that, and I cba with a sit in A&E whilst they check asthma/heart function etc. So my only option really is to figure how how to get the rest i need without driving myself crazy with frustration because I am not doing as much as I want. Because functioning at a lower level is still functioning and a damn sight better than not functioning at all.

it sounds very hard to deal with
are you going to go gluten free? hopefully that might help
my sister, having spent 15 years with cfs now has a diagnosis of crohns (with ehlers danloss,) although most of her symptoms all that time have been unrelated. imo these dustbin diagnoses are just a big fob off, so sorry to sound sceptical
i am glad they tested for hypermobility (and pots?)
did you check all your levels yourself?

Nah the docs stuck me like a pin cushion. Said I didn't have low anything but agreed that it wouldn't harm to have B complex suppliment, and high vit C when I get a virus/cold. Am on a multi vit and calicum anyway and have been for years. Annoying because I get to start the day with up to 14 tablets when I am having a rough patch but Like I said the vits don't seem to make any difference unless I am sick, so I am not worried about them.

I am predominantly following BIWI's bootcamp with a few tweaks on additional veg but not fruit. But there are often cheats which i don't worry about because the main factor in the pain level appears to be linked to energy expenditure/activity level. Not bothering with wheat replacement products because I feel better when I am eating the way I do and like i said really sensitive to blod sugar swings so low carb is just better. Alothough I seem to feel really bloaty if i do eat wheat the most noticable difference has been controlling my migraines and stablising my mood a bit used to be a complete sugar junkie

I know why i am suffering atm and I would get am absolute horrified look from both the physio and the doc if they knew what i did this week. I am too stubborn for my own good sometimes over do it does not even begin to describe it. I forget i am not super human sometimes. Dammit it feels good to be functioning at super human levels and this is exactly my biggest problem

I agree with Rockin D too - Drs too often diagnose primary Fibromyalgia when really it's Secondary as the symptom of something.

in my case Ehlers Danlos syndrome & CKD, but seen sufferers go on to get diagnosis of anything from Thyroid( several) Schleroderma, Lymes, several with EDS, Haemochromatosis, Lupus & other things

I find Epsom Salts baths can help, Maca, Spirulina & sea kelp helps energy, but take with sea kelp, it's contraindicated with some drugs & conditions - also short bursts of activity & rest, or if you know you've overdone it, preempt the flare with bed rest, it lessens it when it hits, is the way I find pacing works best

Physio etc makes me worse too, swimming & yoga or Pilates are far better & sauna helps too

& acupuncture & Manual Lymphatic drainage massage have been the most effective alt treatments for me

Good luck

Oh & Vit D needs to be checked - most are deficient & supplements help

Oh & allergies can be relevant too - my DD has just been diagnosed with dairy & soy allergy & not eating them has helped her aches, pains & stomach problems

Physio stops the resultant popping of joints due to hypermobility, if i don't do it I have far more problems and often pain. I am about to precautionarily strap a couple of joints this morning as they are more unstable than preferred. But equally i have dropped the physio exercises this week as couldn't face them. lesson = physio stays other stuff needs to be more realistic.

Pilates is on my to do list but I haven't had the energy to face doing it until last week and then I did stupid stuff instead, so will look into a local calss for when I have recovered from this patch. Really glad to here that it is known as helping.

OP, never believe anyone who tells you that your blood test results are 'normal'.

That is doctorspeak for 'within the arbitrary reference range' and has nothing to do with whether your results are optimal.

As others have said, you are almost certainly deficient in vitamin D if you live in the UK and if you have food intolerances, you are likely to be even more deficient. Fixing that alone can make a huge difference to the way you feel.

If you want to do what you can to fix your current problems, you should get a copy of your results, with the reference ranges, and get yourself on some forums eg post your B12 and folate results on a PA forum and your thyroid results on a thyroid forum. There are a lot of very knowledgeable people out there and you will very quickly get information that you will not get from an NHS GP.

My calcium tablets have fairly high levels of vit d and it is also present in my multi vit tablet. These are taken daily no matter what. So that is pretty much covered I suspect.

Dairy is not a problem as lactose intollerant so it is cut out, and soy is not an issue with just eating mostly veg.

Really the issue is expectations of what I can and should be able to do. I drive myself crazy when resting because all i can focus on is what needs to be done and what i am not able to do. Can't relax as feel guilty all the time. So when i do feel ok i just push through and try to get as much done as possible and head into burn out at full steam, rather than pacing and balancing it better. I know this is what i need to fix but it is hard when you are not known for sitting or still like ever as a general rule and it has always been this way. Having to learn how to accept something that is so contridictory to who you are naturally is a difficult lesson and one I am not doing well in.

Bitchy if you have Hypermobility too, then you have EDSH & FM is a secondary symptom of it - DDs diagnosing rheumatologist who is a specialist in EDS told me my FM was a symptom too - it is

Really the issue is expectations of what I can and should be able to do. I drive myself crazy when resting because all i can focus on is what needs to be done and what i am not able to do. Can't relax as feel guilty all the time. So when i do feel ok i just push through and try to get as much done as possible and head into burn out at full steam, rather than pacing and balancing it better. I know this is what i need to fix but it is hard when you are not known for sitting or still like ever as a general rule and it has always been this way. Having to learn how to accept something that is so contridictory to who you are naturally is a difficult lesson and one I am not doing well in

That was me too, but you will get there in the end - it's hard, but we all do eventually & it does help - where possible I factor in mini rests if I'm doing something something such as work or cleaning, it definitely helps & where I can't do that, I factor in rest for the next 2 days

But i saw a fibrospecialist rheumatologist. Am I supposed to dismiss the diagnosis of a specialist?

I have had to go from a level of activity which would be considered higher than above average to a level that is below low average. It is frustrating me completely when I am not so ill that I would happily fall asleep and never wake up just to get some relief. I need to see the specialist councillor, i know that but whilst i am waiting i need to know what I can do to start to bring my expectations back to a more realistic set. And i don't even know where to start.

And yet there is no rest for the wicked. Ds needs exercising to be bareable around so I am going to be pushing my limits again. Which is great except I am at the pain levels of feeling sick and wanting to cry. A long walk is not somethign that I really want to be doing, but equally i don't want to be dealing with aspie kid in meltdown. So we make the decision we have to as parents and then suffer the consequences whilst trying to protect form the dc that there are consequences.

it is up to you to be honest

i check everything myself and wouldnt arbitrarily trust anyone with 'specialist' in the title. some people are not like that. but it is your body and you who is suffering so why not be proactive? but it is up to you.

i have known plenty of people on here with perfectly easily treatable conditions who have been fobbed off for years

incidentally multivit tablets have v low levels of vit d in them and is is easy to still be deficient. simple blood tests. causes a lot of bone and muscle pain. more likely low if you have immune probs as well.

getting copies of all your results and posting them on various boards is a good idea. cant hurt, might help

if you actually have EDS, this is a likely cause of a lot of tiredness etc as well

The tiredness is related to the fact that for the last few years I have been getting between 0 and 4 hrs sleep per night, and often pulled 30 plus hour days. This is my own fault. I have completely and utterly exhausted myself with unrealistic expectations of what I can and should be able to do. This was my bodies way of kicking my ass. Along with the diagnosis I was told the year before that if I didn't sort my act out I would be dead within 5 years due to how i was mistreating myself. This is why I care little for the diagnosis and want to focus on re-addressing the perspective. it was a twisted perspective that got me into this mess in the first place. it could turn out not to be fibro and just complete and utter exhaustiong. Which would not surprise me or anyone who knows me.

it is kinda hard when you ask for advice about a specific area to be shouted down by people who are focused on another aspect of the situation. I can understand you wanting people to understand that fibro is not necessarily the answer to the situation and it needs more investigation because doctors are happy to be lazy when there is a catch all diagnosis. But this was never about the diagnosis issue other than I have to accept that it is part of what has changed my definition of what can be considered normal and why the old definition needs to be thrown out the window. Whether or not it is fibro or the fibro fucks off or not. I need to take this warning and learn how to operate at a normal level for my own good. And that is what i was trying to ask for help with.

And I am very interested to learn more about mindfullness. But I suspect if I google this without having a basic concept than i will be lost in google for eons.

fair enough

Hi all,apologies for the hijack but I have just been diagnosed with hypermobility syndrome and i also have anxiety/depression. My DM has fibromyalgia. The rheumatologist who diagnosed me said that if I don't get enough sleep it could develop into fybromyalgia. Is this correct? You all sound so knowledgeable and I haven't a clue about either condition!

The problem with fibromyalgia as has been discussed on this and other threads is that fibromyalgia is currently a catch all diagnosis.

I can't answers you questions exactly but I can tell you that for me the amount I sleep is key to how i feel with the fibro. If i don't sleep I end up with a lot of pain, if i end up with a lot of pain I can't sleep which causes more pain. It is a vicious cycle. So whilst I refuse to say yes that is correct, I will say that it is not worth the risk and to try to get enough sleep. Especially as stress is also a factor that is known to be contributory to the likelihood of diagnosis. But then so can be trauma (eg road accident kinda of thing). There really is not enough known and it is as has been hinted at, a vague inprecise diagnosis. Get the sleep you can and that is all you can do other than look at ways to help with reducing levels of anxiety/depression which is in no way easy.

Good luck honeymoonmummy

Thanks Bitchy

Bitchy, with regards to Mindfulness it's worth reading a bit and listening to a few different apps to find a voice and style you like. Jon Kabat-Zinn is a world authority and I have used his download quite a lot. I will be honest with you, this takes commitment and some time. I suspect I'm not a very goodfexample of a student. Essentially it's living in this moment, allowing thoughts to occur then releasing them and refocusing on whatever you are listening to. If you can manage to do it daily and generally learn to accept your condition I'm sure it's helpful.

I have been attending the Pain Clinic at the National Hospital For Neurology and had, among other treatments, a lidocaine infusion. It didn't help me but apparently it really helps a lot of fibro patients a lot so may be worth investigating. I believe the Hospital for Integrated Medicine (which shares it's accommodation with NHNN has specialist clinics for fibro and will be world class.

If you can get onto a pain management course you will get lots of support and advice. I enjoyed mine and still meet the other group members each month. I did have to ask for the course, it wasn't offered to me. Ditto the Alexander Technique sessions I'm now doing via the clinic. Ask for the lot!