Fibromyalgia

Careful_with_that_Axe

Brave Sharon - well done lassie. Stress, tension, relief - a good cry helps them all. Sometimes I think we get so full of emotions that we have to let them go like a pressure valve or we'll explode. I'll cross my fingers for you too - would cross my legs, but how would I go to the loo? *grin*
It's not an experience that we're likely to make a hobby of, eh?!
sue, I'm sure you'll be able to take heat pad back - Argos are quite good with that sort of thing. If they ask for a proof of purchase, you could get a mini statement from bank if it was paid for by card.

sakara, I know exactly what you mean - I get that in my neck too, although to a lesser degree. That's the time when the wheatbags go in the microwave and I alternate them with a cold compress and end with a self-massage to try to ease them!

Been a funny old day today, for all of us I think. Hope it's better for all tomorrow

Hugs to all.

suep

Sharon Im glad it wasnt as bad as you thought :j this will be you in a few days then

Sakara Im sorry your suffering and hope you get some sleep tonight.

Im off for an early night as I have to get up early for hospital, another instill
one more and they will be over
sue

sakara

oh the icepack is out lol...seen a seller on etsy that does a marvelous shaped neck/back and shoulder warmer/icepack...when ive got money again, im so getting one!

bigzippy

Hi guys, I'm with Cwta on the taking back to Argos thing Suep - I reckon they'll swap it for you and there's a small chance they'd ask to see a credit/debit card statement...maybe if you go with this prepared?

I've had an interesting day and I'm not completely foggy (yet!) or in masses of pain (yet! ) so maybe I'll carry the flag for us all, eh?

I went to see the Endocrinologist (that originally dxed me with ME...from which came the Fibro dx) today and I must've been in there for 1/2hr discussing everything, which was unusual(!) and much appreciated. The first thing she said to me was that she'd had a letter from the CBT woman (that I sacked off before Christmas...remember folks?) which I was interested in hearing what contained...she read it to me and I was like "what on earth does that even mean?!"..."I'm not sure!" she says!! Apparently she did an audit of everyone with CFS/ME that had been through her service in the last year/18 months and had a stream of letters sent to her from this particular CBT person and all of them were quite confrontational and no-one had reported back that it had been helpful! She apologised to me for the experience I'd had with this CBT therapist (who is remaining nameless out of respect for her career!...:rolleyes:)!! It was really good to know that I wasn't the only one that had had a somewhat negative experience with her, and I fedback that I didn't think she actually had any grasp on what a person with ME/Fibro experienced, as if she did she wouldn't set out the therapy room or indeed her therapy in that way!

I asked her (the Endocrinologist) what had happened since I was last there (last year) as she'd said she was setting up a CFS/ME clinic but I hadn't heard anything of it since and I was a bit sore that others (like you guys on here) seem to have been offered things like hydrotherapy and pain clinics and I didn't have any of that. She said that different clinics and Primary Care Trusts get funding for different therapies/treatments so there will be a difference area to area...what do you guys reckon? I told her what meds I was on now and she was encouraged by my response to the pregabalin...she said it's not yet licensed in the UK but it's in the process and she will be using it in the future. (I was a little surprised my GP was ahead on this one! :T)

I asked about having the allergy tests I've been campaigning for (to see if there's anything else that could be affecting my general well-being) and she's testing for one or two things (but for the RAST test you have to go with a specific list of things you want to be test for) and she's asking my GP to refer me to a Chest Clinic who should/will do more allergy tests on the basis that I've had the two hospitalising asthma attacks in the last year and it would benefit the asthma to get any allergies under control (incl. scratch tests etc)...(does that make sense? )

The thing I think I found more interesting almost though was when I mentioned about my weight. She said that anyone over BMI of 35 has a different process with regards food etc...that insulin is constantly produced in my body and that, in effect, stops my body using up fat stores. From what I understand, from what my doctor told me, reagarding me (;)), to stop that happening I have to get to a level close/on starvation so that the insulin process stops and the body fat stores can be used...however, that's the level at which people get the shaky low blood sugar symptoms, so straight away go for food - which then perpetuates the cycle and nothing changes. She said that there was two options but she didn't recommend one (as it causes lots of diahhroea(sp?) :eek:) but the other (which I won't name incase teacher comes back and slaps my wrists...;)) stops you feeling hungry so I could go down to just 600cals (presumably for a specific time/until I got to a healthier level?) as I can't do the more widely recognised and recommended excercise regime type treatment. So there's hope - YAY! :j So she's going to write to my GP about it and we'll see what happens...

On the downside of my day, I rang the rental agents to remind them that I did, indeed, ask for furniture and trinkets to be taken out of the new rental house before moving in and never got a call back. I swung round past there on my way home and they've not been removed yet...and they have less than 24hrs before I get the keys... :mad: Grrrr. They'd better sort it out quicksticks!!!

Sorry for my long post, esp if it was boring or too much for foggy brains to take in, but I thought it was interesting and had to share

I should really go back to the ol' packing I guess.... catch ya later dudes :wave:

P.s. Glad the injection went well Sharon

Trialia

Interesting post, BZ, and I wish you luck. Pregabalin's the next one my pain specialist is planning to try on me, though with what I hear about its effects on confusion and fatigue on occasion, I am going to ask him if I can trial Modafinil with it to see how the two would balance. Given all the research I've done. And while pregabalin isn't licenced here for treatment of CFIDS and FMS - that's an off-label use - it is licenced for use in other ways and as a doctor's discretion permits.

Careful_with_that_Axe

BZ, interesting post. I need to digest for a while, figuratively and literally!
You've been quiet today, so was glad to hear from you.

kassandra

Well it's just taken me about an hour to read all the posts and now I've forgotten what I was going to reply to so I shall just say a big Helloooooo to everybody.

I'm shattered today. Felt ok yesterday and my mate rang me and said she needed a lift to Hull. Yes Hull!!! Not a few miles down the road, not can you just give me a lift to the supermarket. No, my mate wants to go to Hull.

Yes of course say's I, thinking it must be something really important for her to ask me for a lift 60 miles away. What does she need to go to Hull for..............a kitten! She NEEDS it she say's. So off we go.

Now I feel like poo and I have loads to do. I'm going to Ireland tomorrow for a few days with my eldest to treat her for her birthday. It's a surprise so I've got to get her bag and mine packed before she gets home from school and I've not even done the washing yet!

We are staying with friends so it's not going to cost me anything for accommodation and the flights cost me £2 each. Yes, that's right, £1 each way!! Very MSE eh!

Well, toodle oo (er yeah I don't know why either) for now. Have a great day everyone!

Oh actually, before I go, you might be able to help. I said it's a surprise but there has been mixed opinions between my family and friends. Some say to keep it a surprise and others say I should tell her in case there is anything she wants to bring. What do you guys reckon? I thought that as long as I packed her straighteners and make-up along with her best clothes then I couldn't go wrong. But then again, I'm not 14 so may be missing something!

bigzippy

Well I thought there'd be more action on here today than there has been!

Kassandra I have no clue. I was going to ask you how old she is but you said 14... Ummm... does she have anythinglike an iPod or games thing or something? At what point are you going to tell her? At the airport?

I've been informed by my lovely fiance that he did indeed ring the rental place (as per my request while I got some more shut eye in preparation for the move of the century! ) and they told him that everything was moved out this morning that I asked to be removed (from the new house) so PHEWF! I was quite geared up for a disappointment tbh! (Is that a bit gloomy? :rolleyes:) So now I have to make myself presentable...:rolleyes: and have put the heating on in preparation for this ardous task! I need to go to the banks too and withdraw a hellious amount of money to take down there for deposit and first months rent etc...so have asked a friend if she'll be my body guard! I think it would be more like the other way round, if it came to it, but mother always used to say there was safety in numbers....;)

I'm such a staller...I should SO not be on here when there's still packing to go! But then, I was out on the town til like 1.30am when I had a pick up for the airport at 3.15 and I still hadn't packed!! Shouldn't be so surprised there's stuff not done then I guess... :rolleyes:

LameWolf

Kassandra I can't advise you there, I never had kids, and 14 yrs old is waaayyy too long ago for me to remember Have a good trip though.

BZ I bet you must feel well vindicated now - yes I do remember you telling us about your awful CBT therapist. Now, get off your computer chair and back to the packing!:D

Sue Our branch of Argos have always been very good about returns - I'd take it back if I were you. After all, what's the worst that can happen?....

I hope everyone had a reasonable night; and while I remember to mention it, I'll be offline after today til next Wednesday. Mr LW has some time off work. We'll be having a nice day together Monday, and then on Tuesday he has to visit the Fang Farrier, and I'll be going along in case he doesn't feel well enough to drive afterwards, as it's some fairly major dental work he's having done.

EDIT: Thanks to all who uttered encouraging words. CwtA yes it was the dawg grumbling. I've given him a hambone to keep him quiet.

bigzippy

If you need a laugh and have a few mins spare, read these (they're hilarious):

Complaint letter of the year winner (has censored "language")

The world's best pasenger complaint letter? (don't think has "language")

OH found them last night...methinks the new job has got to him already (Ombudsman "Enquiry Officer")