Fibromyalgia (part 2)

tireesix

I just hate the temp thing, one minute I am freezing and the next I am boiling and sweating.

Clothing is a nightmare because I soak though it. Bedding at night can get soaked. I also co sleep with my youngest and if its a bad night, both of us wake up absolutely soaked.

The fatigue and forgetfulness, aaaaaaaargh. I just get so tired, breathing is a chore. Last night I fell asleep at the computer. I am constantly forgetting stuff, people told me to get a diary and I forget that I have it. I write shopping lists and forget to take them, I get my shopping and either forget my debit card or walk off without the shopping.

The pain that is associated with both problems I have is just rotten at the moment. Every morning I hate waking up because I know I am going to be agony, but with 3 children and a husband with health problems, I have no choice. I have tried everything, right now I sleep on a mattress on the floor because for some reason, having it on the bed base makes things worse, sometimes I just sleep on the floor with just a couple of duvets underneath me because it seems to give me the most restful sleep but I just can't keep doing it.

Whilst fatigue isn't as much of an issue for me at the moment (despite still needing a lot of sleep) the pain is. I just don't know what to do with myself, at all. Afternoons aren't so bad but evenings and mornings :mad: .

The other thing I get is 'if you are in so much pain you wouldn't be able to walk so much'. People don't seem to be able to understand that if I just stay still, it gets worse. As long as I keep moving its bearable, which I guess is my whole problem at night. Because I don't move much at night, everything seizes up. So, I have the whole pain and movement problem with the EDS but the fatigue with the FMS and it just leaves me not knowing what to do for the best. Do I move to reduce the pain or do I rest so I am not so fatigued.

Thankfully, I have a really good, understanding Doctor at the moment who has been really good to me.

She is sorting out a new appointment with a pain management doctor who actually knows something and understands my health problems (my current pain management guy is useless, according to him hypermobility is just none end of normal, never mind the fact that I am not just hypermobile), so I may get to use the hydrotherapy pool but at least get a referral over to Physio again. (I gave up with physio after year due to my notes being lost, having different physios who kept contradicting each other. 1 of them, she couldn't see me for a while due to maternity leave, I got to see her once before she went on holiday a couple of weeks later and I wasn't going to be able to see someone for ages, kinda was the last straw but desperate now). I am willing to give them another but otherwise, I am going to have to seriously consider paying for physio myself.

Jeez, I really needed a whinge

Thankyou!!!!!

So, is someone getting wed then?

LameWolf

Careful_with_that_Axe wrote: »

Don't know if anyone is interested, but when I recently went to a National Trust property, they told me about an "Admit One" card that they can issue by request to a carer accompanying someone who has disabilities. You don't have to be a member to get one and your carer gets in free! I think it makes NT places much more affordable if you can split the cost of one admission ticket between two people. It isn't a named person, you can be accompanied by anyone you like.
If anyone wants the contact details to get one, let me know.

Yes please - Stowe Gardens is NT and close to us, and it's a lovely place to visit, so getting Mr LW in for free as my carer would be great.:o

tireesix wrote: »

I didn't know there was a fibro thread here...... Can anyone join in, like me perhaps?

:hello: Greetings!

bigzippy wrote: »

:wave: tiredly. Back from Brummy with wedding rings :dance:

YAY!!:jAnother thing to tick off the list.

I'm "supposed" to be backing up my hard drive, defragging and all that carp, but I thought I'd sneak on here for a minute or so, just to check in.

We spent loadsa money yesterday - ordered a new bed and a new sofa:eek:
But it's been on our list of things to do for about a year, so not an impulse buy. Hopefully it'll make my back troubles a little less - well, - troublesome.:o

Hopefully you're all having a good weekend; I'll have to get back to the fray in a minute - got bread rolls to make, tomato plants to check, husband to put a foot behind..... all the usual weekend stuff that always leaves me totally pooped on Monday.:D

Trialia

*crawls in* Hey guys... sorry for not posting much. Bad flare caused by housemate and landlady bullying... I'm trying to find a new place, because I can't stay somewhere where I am afraid to go home.

tireesix wrote: »

Do you find it difficult to determine which symptoms are fibro, which are down to meds and which are down to other health problems? (I have EDS hypermobilty type as well).

All the time. I have EDS hypermobility type, like you, rapid-cycling atypical bipolar disorder, asthma and migraines (had them before I developed FMS, and still do). I never know what's caused by which.

black_paw

trialia ..sorry to hear about you having to find a new home, what awful people to bully you . your be better off away from them.but what stress trying to find the new place

bigzippy... wow the rings have arrived ..this is happening so quick ..

tireesix ... hi ya welcome

lamewolf.. wow new bed ..bet will sleep better now..did you know you should change your bed 3- 5 year depending on make and type.comfy sofa very nice, don't spill anything !

cwta... did youget to m x s sale ? i had a little look seems all the carp that came in month or two ago was the bits reduced ! brought in sale stuff , they just sold at higher price for month then reduced it !! main lines hardly anything.

sharon... hi nice to read you back on here

sorry if i missed anyone out , hugs to all

purplecatlover

tria sorry your having such a bad time at the mo...hope you get somewhere new to live sorted asap, crap at home makes everything else so much worse

paw nice to see you, was wondering about you (and a few others) earlier did you read my mind?

cwta glad to hear your on the mend.

lw yay for new sofa and bed.

sue hope your ok and have just gotten very busy unexpectedly.

Unity

Afternoon people :hello:,

I haven't been able to go through all the posts I've missed as it's just too painful to sit at the mo. I did catch that CWTA has swine flu, so I do hope you feel better soon - it's the last thing you need with SLE. Sharon, I hope things are easier for you and Sue I hope your dad is getting better after the op.

I would love to say that I've been away enjoying myself , alas it would be a lie :rolleyes:. Unfortunately my pain levels have scooted through the roof - which has resulted in the patches being increased to 100mcg, which I really didn't want to do. As a result I'm having bother stringing two thoughts together and so very tired due to not sleeping because of the spine pain.

I saw the specialist nurse in April and got a letter to say I'd be getting my facet joint injections together with another transforaminal epidural in two to three months. Well, I phoned on Thursday to ask if I was near the top of the list yet and was told it will be another six to eight weeks before an appointment is sent out :eek::(. I asked the secretary if she would note on my file that my pain level is now off the scale they use from 1 to 10 and she said she would. I also said that I will take absolutely any cancellation regardless of when it is or how short notice, heck I will crawl there at 2 a.m. if necessary

Sorry for the whinge - I know there's folk far worse off than me and if I can just get to the stage of being able to think of something else other than the pain for a couple of minutes I will be great!

I'm going to try and have a nap now - in fact I don't think I have a choice in the matter:rotfl:

My blood tests still haven't come back, they usually take a couple of days but it's over a week now, so I just hope they haven't lost them :rolleyes:

tireesix

Unity, having to wait so long for pain relief is awful and you have every right to whinge. Last November I got a referral to pain management, I got a letter saying my appointment would be end of february. Then, after getting my hopes up etc, 2 days before my pain management appointment, I got a letter saying I would now have to wait until the end of April and I literally just burst into tears. So you definitely have my sympathy! What was even worse, I get to my appointment and have to put up with the idiot pain management doc who isn't great at the best of times but that day was a complete K:mad:b!

Careful_with_that_Axe

Tireesix Sounds like you're having a hard time at the moment. I hope it passes soon and that things look up for you.

Trialia Sounds like you need to find somewhere else to live pretty quick. Is there anyone who you could stay with in the short term?

lw Oooh! New bed and sofa! Demand piccies of the sofa please? *g*
Money spent on a good bed is never wasted - I had a 2nd hand matress that cost £20 for 6 years and when I finally was able to buy a new matress, it was a wonderful relief.

Unity You poor love. Lots of 'ugs to you. Knowing that there are people worse off than you doesn't actually help one cope with one's own pain though. Hope you are able to sleep through the worst of it and that the blood test results come through soon.

Winge time I'm afraid. Thought I had finally fixed washing machine after buying jubilee clips and put some washing - came down from having a bath to find the kitchen flooded - it's now leaking from the filter at the bottom. Knackered back and neck moppiing up floor and then tried 3 times to fix this new leak - each time ending up with more water all over the place, but I've now given in to defeat - til tomorrow.
I've got an acquarium being delivered tomorrow from Dad's wife - she doesn't want it and the chap who is delivering it is a sortta handyman, so I hope he may have time to have a quick look for me and sort it once and for all. I suspect it's just a faulty washer, but I've just about had enough of fiddling about with it.

Dad visiting tomorrow so he can criticise *g*

suep

Hi all,
I have just read all the last mails since my last one, but I've forgotten almost everything already

I've had quite a busy weekend, we went to a fete ran by a local farm yesterday with ds1 and gs, it's called Cornfest as they grow sweetcorn, gs had a go at sitting in a police car but was quickly dragged out when he wouldnt stop pressing everything :rolleyes: and I got a lovely amethyst necklace and earring set from a crystal jewelrey stall. We took the wheelchair but the ground was really bumpy and dh couldnt push me so we didnt stay long.
Then today me and dh took Diamond for a walk along the prom, well I went on the scooter, it was really cold and windy you wouldnt think it was July, but it was nice to get out.

Dad should be home by the end of the week ( fingers crossed)

Welcome Tireesix Im glad you have a good dr , I was agreeing with nearly everything you wrote, but I cant remember what it was now sorry I think Ive overdone it this weekend and the fatigue and pain are both pretty bad this evening.

Im off to bed now, hope everyones ok
TC X

bigzippy

:wave: Hi guys. I've been catching up in spare moments through the day but not got chance (or memory) to reply. Had BIL round today to go through the vows and order of service etc, so that's pretty sorted now til the rehearsal. Then went round to see MIL2B this evening and played some cards with her and DF...and didn't win a single hand! DF was veritably jubilant about it too! :rolleyes:

I'll be back tomorrow, hopefully with something more interesting to say....