Fibromyalgia (part 2)

Unity

tireesix wrote: »

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!

Welcome Tireesix :T. Unfortunately I can beat that . When I originally checked how long the list was for an appointment with the PC, I was told around 18 months :eek:. When 18 months came and went I rang again and it transpired the referral had been lost :mad::rolleyes:. You couldn't make it up! When I was seen it was a complete waste of time too . Thankfully some years later, I saw a neuro-surgeon in the next town who asked if I had been to pain management. I told him I had (and been on the pain management course) but that three years later they had said I was unsuitable for any further procedures, without even seeing me:eek:. He was very good and referred me to the PC at his hospital, where the consultant immediately said he would try facet joint injections and a transforaminal epidural. The result? Well for the first time in over 30 years my pain was manageable :T.

purplecatlover wrote: »

morning all

unity can you phone them every week to ask if there have been any cancellations? that way they cant forget that you want one asap. whinge away, just because there are other people who might be worse of than you does not mean your not allowed to whinge or whine or grump about it.

Hi PCL. This particular secretary is very good, so I know she will follow things up. I also know she is very overworked, so I think my best way forward is just to confirm everything that was said to her, in a letter to the PC consultant, reiterating that I will take any cancellation - no matter what time of day or night , or how short the notice. I'll crawl through fire if that's what it takes .

Careful_with_that_Axe wrote: »

Unity Fingers crossed you feel a little better today.

Hugs to anyone I missed. The sun is out today (albeit briefly) and the fishies come this morning.

Hi petal, well the patches have started to take effect, but I think this is the best it's going to be until I can get the procedure scheduled. This time I am going to ask if it is possible to have this done on a regular basis before it gets to this stage. It was such a struggle getting out of the wheelchair that I don't want all my hard work undoing iyswim? It's okay for the medical professionals since they don't personally have the problems of then reducing the patches and getting back some mobility again.

On top of this I think I've got another urine infection as it feels like I am peeing broken glass :eek:. I have decided to go the alternative route this time though and have started taking Manuka honey with a UMF of 15+ as recommended by my good friend who has to have Botox in her bladder:eek::eek::eek:. She says she's managing to control it using this rather than taking antibiotics which has to be a good thing.

I'm not noticing any improvement with the Thyroxin yet, but I'm still only on a low dose 50mcg (up from 25) but a girl from my knitting group said it took over a year to get her dosage right.

For anyone who is feeling flush (in a money sense ) just before the pain got so bad, I managed to bag a pair of sale price MBT's from amazon.co.uk http://www.amazon.co.uk/s/ref=nb_ss_w_h__0_3?url=search-alias%3Daps&field-keywords=mbt+shoes&sprefix=MBT . I had previously mentioned to Suep that Skechers have brought out a similar product at about half the price of MBT's and I was waiting to see the reviews. Well one person had tried both and said that MBT's were better made - but the Skechers were still good value. Anyway the MBT's were reduced so much that they were the same price as Skechers so I was really happy to be able to get another pair, since my present ones are at least three years old and probably more:eek:. If it hadn't been for these shoes I am sure I would still be wheeling around with DH being asked "Does she take sugar":rotfl::mad::rotfl:. I just thought I'd pass it on as they really helped my hip pain and the pain I get from the bone cyst in my thigh.

It has taken me two hours in total to write this (lots of breaks ) but I'm losing track again and my eyelids are drooping so I'm off for a rest :wave:.

I hope everyone is as well as they can be and pain levels are manageable.

LameWolf

Trialia wrote: »

*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.

It was my intention to ask if anyone had heard from you Trialia, but I see you're still with us.:o I hope you can find a new place soon; no-one should have to live with that sort of stress.

black_paw wrote: »

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 !

Yes I did know - and our current bed is about 10 years old (Mr LW bought it about 3 years before I moved in with him, he thinks). It'll be delivered in about a month, and the sofa about 2 months. But we've been um-ing and ah-ing over these for about a year, so a bit longer to wait won't really matter.

Careful_with_that_Axe wrote: »

lw Been meaning to say for a while - I have a wonderful book "Artisan Bread in 5 Mins". It's a dough that you make up and store in the fridge and tear bits off and bake as you want them. Would you like the basic recipe or the book details? I'll swap you for your tomato bread recipe? *g*
I thought the dough could come in handy for those days where you are too tuckered out to do it from scratch?

Sounds good - and I'm always pleased to have new recipes.I do the tomato bread in the breadmaker, and I tend to use the "bung" method (ie bung in what looks right and hope!) but I'll make a note of how much tomato I use next time I do one (don't worry, it'll be soon).

Unity you poor lamb. I can almost feel your pain, reading your posts. I hope they can fit you in very soon, you shouldn't have to live like that.

*SIGH* as usual on a Monday, I'm cream crackered today; and I still have a list of jobs that want doing. I'm afraid most of them are likely to be deferred to a later date. The only absolutely must do today is the rubbish and recycling - the bin men come tomorrow. But Mr LW can help with that when he comes in from work.

sharon59

afternoon all-finally a quiet moment!one lot gone to beach others shopping me let dog sitting!
Had OT visit this morning -they were amazing am getting
wheelchair
things to go round toilets to help get up easier
reclining chair for lounge so can keep leg up comfortably
sock puller on
long shoe horn
bath chair so l can lower myself in and out of bath-cant wait
percher stool for resting betwwen jobs
something to go behind pillows in bed to keep me upright and help breathing.
was amazed by how they wanted to help keep me independant and were sweet about it as well.
Next we are investigating reconditioned stair lift -getting it sorted early better than at time of crisis they insisit -and does make sense.Its only thing we hve to pay for so as said before am surprised and grateful to the NHS.
love to all -and l the only one who doesnt have there wedding outfit yet-and are we wearing hats-only got 6 wks now!

black_paw

purplecatlover wrote: »

i ahve to nip tot he post office, and i may go to the cinema since i sort of told a friend on sat i had the ccea card and she leapt at the idea of getting in for less than full price and really wants to go. the local cinema only has one film on that i might want to see, and its only on at 3pm ever day, so the only days i can go are today and weds so ill ring her in a bit and see if she wants to go today since its wet and nasty and i then dont have time to decide i really dont want to go at all because there will be people there.

i have a card too , there's a few films i want to see , but always seem to miss them , like go at end of week , and they have changed it, but if film is too long feel i very uncomfortable there, i do take pillow to sit on and for back, but sitting long time is too hard work for me, i have now joined dvd club, so i can watch at home, which is much better i can lay out on floor cushion , stop and start the dvd , walk around. ect. enjoy your film :T. what are you thinking of seeing ?

black_paw

unity...reading about about the mbt's how good they are , i must say i wear nearly all the time nike snox trainers, they have springs / shock absorbers in the heel , i find im not so much in pain in legs and hips with these on, and don't jarr my neck so much.

LameWolf

Hey Sharon that's really good that they're going to supply gear to make life easier for you. And it does make sense to get the stair lift sorted now, not wait til it's desperately needed. I'm lucky, Mr LW already lived in a bungalow when I met him, so no stairs to have to worry about.:p

Black Paw we quite often go to the cinema - always on a Tuesday, as MK Cineworld has a cheapie day then. I use my wheelchair and stay in it, as I have the special coccyx cut-out cushion because I get a lot of pain at the base of my spine if I sit on a normal seat.

black_paw

sharon59 wrote: »

afternoon all-finally a quiet moment!one lot gone to beach others shopping me let dog sitting!
Had OT visit this morning -they were amazing am getting
wheelchair
things to go round toilets to help get up easier
reclining chair for lounge so can keep leg up comfortably
sock puller on
long shoe horn
bath chair so l can lower myself in and out of bath-cant wait
percher stool for resting betwwen jobs
something to go behind pillows in bed to keep me upright and help breathing.
was amazed by how they wanted to help keep me independant and were sweet about it as well.
Next we are investigating reconditioned stair lift -getting it sorted early better than at time of crisis they insisit -and does make sense.Its only thing we hve to pay for so as said before am surprised and grateful to the NHS.
love to all -and l the only one who doesnt have there wedding outfit yet-and are we wearing hats-only got 6 wks now!

i don't have a dress yet but found a fishing hat :rolleyes:...could put some flowers round it ! ! just putting some colour on hair , to look good ahhhhhh :eek: must go now , i left it on too long as been on here !! could have red hair and be banned from wedding , or wear bag over head with peep holes cut out ! :rotfl::rotfl:

HopeAndDriftWood

Hey guys!
Sorry for not posting in a while, I've been feeling terrible.
I've just about caught up, I think!

Just rang up to make an appointment at the drs about DLA, expecting to get one in a few days, but have one at 4pm this afternoon now. I've only started to see this doctor recently, and while he is lovely, I have no idea how to tell him how bad it is.

My boyfriends mum has given up working 3 days a week so she can look after me when boyfriend is away, and I am carried downstairs in the morning, to the toilet when I need to go, cooked for, and carried back up to bed at night. I spend most of the day lying on the sofa. DLA wrote to me to tell me they've asked him for a report, so I need to go and tell him, but I don't know how to say it. I'm terrible at letting people see how much I can't do, so I tend to put on a smile and try my best....

Has anyone got any advice? I thought about writing some notes for him, but I don't know how to give them to him, and I don't want to bore him with everything I can't do. He's referred me to the hospital, my appointments on Aug 12th, but DLA will want a response before then.

I hate all this stress....got my ESA medical on Friday and I'm petrified.

Hope everyone's feeling much better then I am at the moment, take it easy and have a good day

K x

bigzippy

sharon59 wrote: »

sock puller on
long shoe horn

Am intrigued about these, I think mil2b could do with having them. I shall mention to her... alternatively Ikea do a really colourful one for about a quid that I got for my dad for when he was having his bypass.
They've offered her a perching stool and a shower stool, but methinks it's taking its time getting here... I hope they're quicker with you sharon

sharon59 wrote: »

love to all -and l the only one who doesnt have there wedding outfit yet-and are we wearing hats-only got 6 wks now!

I know! Scary! And I've still got one or two invites I've been rather lax in sending. Oops! My mum was on about a hat that she reckons would go with her outfit, but she didn't wanna wear one if mil2b wasn't wearing one (and show her up??) and I think she'd be the only one that would be wearing one...!

purplecatlover wrote: »

bz this last few weeks are really flying by now, im going to miss all the wedding preps when its over.

Tell me about it! I think I'll feel lost when it's all done!! But then there's always sorting through 500,000 photos to put the wedding album together
As much as I'm looking forward to the day and seeing everything coming together, I'm really looking forward to being married to him And the honeymoon and living here together properly and planning the rest of our lives together :A (I'm such a softy )

purplecatlover

not going today, going weds instead, shall be the proposal as i dont want to see bruno (made by makers of borat is enough to put me off) ice age 3 will disappoint, witch mountain is a remake of the old disne and remakes like that almost always fail to live up to my expectations, harry potter im wary off because i suspect they ahve skipped loads of the book out as its no longer than the preious films, ill wait for that on dvd, changling is only on for the senior showing on thurs and i dont know if by senior they mean seniors only or if i couuld get in too, and thats the choices here. i really want to see skin but cant work out if its only on in one odeon because its new or if ive missed it completely. and as all the movies start at different times we cant just turn up and choose what looks like it might be good from the lists there like we could when i was a kid.

little doggy just came to visit again, every time whitney turned her back he tried to sneak up for a sniff only to run when whitney looked at him.

sharon im glad the are being so helpful with aids, that should make life easier for you. i dont have awedding outfit yet either, its creeping up on us fast though really must think about getting organised.

unity hope they get a cancellation quickly and she does phone, its good that she can be relied on to do so, rather than needs nudging and reminded regularly, if only all secretaries were the same.