In tears with this, Fibromyalgia flare up pain and bp monitor

[Saltire]

I've had really bad flare up pain for about 2 weeks now, haven't slept properly and all the usual things.
This morning, 8.30, I got a 24 hour BP monitor set up on my arm. It goes off every 30 minutes.
My flare up is in my arms and hands today. I am crying every 30 mintues as the bP monitor inflates and really hurts my arm, then deflates lsightly, then inflates again, does this maybe 4/5 times before deflating.

I am going to be demented by 8.30 tomorrw with fuck all sleep anyway because of pain and then this thing going off every 30 mintues.

Just wanted to rant

Rant away! Flare ups are pants but a monitor as well! Does the bp monitoring have to done now when you are sore - or could it be put off?

Hi Saltire, I've seen the MN M.E section, but didn't know there was other FM suffers on here too, I have it myself, so Know EXACTLY what you mean & I feel for you :(.....I find that BP monitors can hurt a lot too, thatswithout a flare to make it worse, so I don't envy you a 24 hr one, is it an average BP check you are doing??,

can you not speak with your Doctors & miss out the night time or do it again another time, but prepare yourself better so as not to be flaring???....it might be worth speaking with them, I find these days Doctors are far more understanding & accommodating to us than the used to be.

Also have you tried using Epsom Salts in your Bath, its a good way of upping your magnesium uptake, which helps with pain & sleep, lavender & chamomile aromatherapy oils can also help, as can taking 5HTP half hour before bed.....also do you get given Diazepam for muscle spasms??....if not ask about it, I find that with help knock me out when nothing else is working

I'm sure I don't need to tell you getting your sleep under control really is the key to managing it all, no cure, but makes a HUGE difference...... after 7 years of dealing with it, mine is mostly OK, but all pear shaped again this week or so due to a Damned recurring lymph gland infection thats swollen pressing on a nerve, causing me severe face & neck pain & has me up & pacing the floor at night .........as a result my FM monster is back & snapping at me big time again too, thankfully my GP listened & the anti b's are starting to kick in, but its served to remind me how bad it can get when missing out on sleep....that & this damned weather of course

Can you get to a Sauna??, I find that can help a lot too

hope you feel better soon, if you don't already know it, you might want to try FMAUK, you'll find good support & coping tips on there

Thanks both of you.
Rockinhippy - I am going to go and se the doc next week, as I want an "overhaul"of my FM.I got diagnosed in 2005, and had a lot of help when living in Fife, but then moved to hampshire and was basically left to get on with it, no help or drug re-assements were done. I and the Gps ahve been busy concentrating on my BP in teh year since we moved here, and to be honest, until about September/October I hadn't really had a bad flare up.Plus my BP reading were ridiculously high - 176/129, 180/145 etc Then we started getting massive problems with a neighbour, which tipped the bP off the scales and started up my FM flare ups again.

SO going next week and asking to get drugs reviewed etc

I've cancelled my mindees for this afternoon as I cannot do it. Every 30 minutes this thing starts. My whole arm goes completely numb and sore and my hand goes a blusih tinge!!

I also have BP problems, after lots of bad reactions to various drugs.....some made my FM worse??, could hat be possible for you now???
& 1 leached pottasium causing me to have panic attacks, finally now have Approvel, which works & strangely actually helps some of my FM related symptoms, especially Sinus problems

.......& Yes, its similar around here as far as being left to it goes, its only because I found out about local services & demanded refferals that I got any real help, If I were you I'd ask on FMA UK about services in your area, you might have a M.E or FM clinic or a pain management clinic......PM Clinic taught me about & pushed my old GP into sorting my drugs out, though my new GP is much better, she tends to take my lead on things, good she listens, but it would be nice for me to not have to research myself first "rollseyes"

good luck :)

PS, remember with high BP....high pain levels with send it up too, so even MORE important your GP helps, as it will make your BP worse

butterfly effect - ha, I don't know. I was lucky I lived on a military base there and had 2 fab military docs as my GPs. 1 of them was the one who sent me for a FM diagnosis int eh first place. I have to say though, Forth park rheumatology were fab

My BP has been very high since Jan 2010. I have tried various cominations of drugs. And the FM - well at the minute all i take is 20mg Amitryptiline at night and Co-codamol 30/500. But it's not hleping. i also work as a CM ( have got some issues with the fmaily I CM for) and DH thinks this is possibly not helping my FM or my BP!

X posted :) ....I've had that too, but i was part of what got me the M,E diagnosis I also find its somehow linked to my neck/arm, & is agravated by anything I do to stress that, such as typing, using mouse, cutting out, scrubbing, cleaning etc etc,

& I've found nurofen helps it the most, along with ice & heat packs, as somehow it seems related to internal "swelling" pinching things, as if something too tight around my armm....can't quite explain it but I'm sure you'll know what I mean, it not pleasant at all & a bit scary if you don't know it :( ...not killed me though :) & I get MUCH less of it by pacing using my arm

hope some of the above helps you too ...now go get some rest :)

rockinhippy - that tight feeling , I get that so often (not just iwht a BP monitor) It feel like my whole arm is really tight like it's in a vice and it goes completely numb, then the tightness wears off but I'm left with numbness.

my symptoms are
Fatigue
widespread muscle pain
swollen digits (not joints) during a flare up
sight problems
cognitive memory problems
tingling in 2 fingers (have had this permanently for 2 years now)
sleep problems
neck and shoulder pain - like I'm being stabbed
eye pain
TMJ jaw pain

I hope you are feeling a bit better today

& yes your DP is probably right as regards your work problems affecting your FM, stress is a killer for all of us I think, I do my best to avoid it like the plague, or at very least try & ask myself "will anyone die" & if the answer is no, then its not worth making myself ill over.....mostly works for me, though I can't often work anymore & when I do its for myself, which helps a lot with avoiding stress

Yes.... how you describe the arm thing is exactly as I know it, I've even had my viens on that arn/hand swell up as if I had a rubber band around it stopping circulation.....I did keep going back trying to get answers for that, as I work with my hands & realised the more I did, the more it happened & in the beginning it was pretty scary ...amazing what you get used to isn't it......I was eventually sent to an M.E. clinic, as we don't have a local FM one.....I hoped they might send me for tests that would finally get an answer to it, but the specialist there reckoned its very common amongst M.E patients & diagnosed me as also having full blown M.E. as a result if I'm honest I'm still not sure though ............though from my experience people with M.E generally don't tolerate a lot of drugs well, I certainly don't & have to stick with the basic older style pain drugs, Amytriptiline made me MUCH worse

I have wondered if the swelling is some sort of Oedema, Drs say not, but I went to see a private Manual Lymphatic Drainage Therapist, who also does work for the NHS & she agreed I definitely show signs of that, & out of all the therapies I have tried that 1 is by far the most effective, forced myself to go on really bad days when struggling to walk or do anything due to pain, & have come away pain free, so I can highly recommend you trying it

I get the numb tingling too, though so far not permanent in my fingers, but I do have it permanently in a couple of toes, & patches of it elsewhere such as over my shoulder blade,

The Stabbing neck & shoulder pain is likely muscle spasms, I get that too, especially if generally having a rough time, muscles tighten, & spasm more easily during flares, I had my neck lock completely a few times & was given diazepam for this in A&E, it worked & now my GP has it on repeat so I have it at home when I need it, like morphine they are not keen to prescribe it though, due to its addictive nature, but thankfully my GP knows I hate taking pills, & only take when I really need too, the Pain Clinic were great with helping with all that) so she's now fine & it is a Godsend, means I can deal with it immediately rather than wait for appointments etc.

Reading your symptoms list though makes me wonder if you've looked into Thyroid problems thoroughly??, especially if you have any in your Family, the eye pain can be a symptom of that & the only others I've known who also get that have gone on to get a Hypothyroid Diagnosis at some point.....apparently the GP Thyroid tests are notoriously unreliable, but they are only allowed to do more indepth ones if you show up as at least borderline

There is an Ex NHS Endocrinologist "Dr Peatfield Durrant" who has written some good books on this one being "Your Thyroid & How To Keep it Healthy" he is a bit of a controversial figure, as he left/was booted out of the NHS (depending on who you talk to) for his veiws on the NHS testing & treatment not being good enough, I know several people who have seen a massive improvement in symptoms because of him, so definetly worth a read if nothing else

also do you know about Nurozan??, its a brain food type supplement aimed at helping students etc revise for exams, I personally found it can be a big help with the cognitive stuff, no cure, but definitely helps

XX