Fibromyalgia

suep

Hi all,
I actually got out of the house for a while today and went to my Mums, it did me good to get out for a while. I also had my reflexology app which is lovely and relaxing although I have this really bad pain in my low back/buttock, it goes down my leg and into my foot, I thought it was sciatica for years but was told last year that its the sacroilliac joint which connects the bottom of the spine to the hip bone, as far as I know nothing can be done but I try to avoid certain things I know are triggers but every week my hydro session sets it off, Ive tried avoiding certain exercises but nothing helps so I might have to give it up.

Unity thanks for asking about my Dad, he's struggling a bit with the chemo side effects now he's getting towards the end of his course (next week) he thinks they have probably increased the dose now as its making him quite ill. We are all just praying it's done the trick. He is still very positive bless him.

Welcome Kompess you will find that we are a very supportive and understanding bunch. I know what you mean about always being in pain and the tablets only taking the edge off , I wonder sometimes why I take them, but the few times I've tried to stop have been horrendous so Im happy that they just help a bit now.

I'm not sure if I've already mentioned that my daughter was in a car crash 2 weeks ago, shes 18 and a trainee hairdresser, shes got bad whiplash and damage to the bottom of her spine and has been signed off work initially for 2 weeks and yesterday for another week, Im worried as she has had musculoskeletal problems in the past and I know something like this can bring on Fibro. She went to see a Chiropracter today on the advice of her boss and he said her right side is in trauma and he cant work on her until its loosened up a bit, so shes got to do a few gentle stretching exercises for now. I think its made her appreciate what I go through as she is much more sympathetic towards me now.

Kassandra that head master sounds a really unpleasant man, I nearly swore then and remembered I couldnt :rolleyes: I hope you get your blue badge soon, that will show him.
sorry Ive waffled on a bit
take care all
sue

Careful_with_that_Axe

Sue, sorry I forgot to ask about your Dad. The chemo has a sorta cumulative effect, so side effects tend to get worse towards the end of a course. Also, I think you get worn down after a while - we all know how that feels, right!
They're threatening to try a new course of chemo on me, but I've been looking it up and it's a fairly aggressive one, so I'm going to hold fire for a while and see what alternatives there are.
So sorry to hear about your daughter - how awful for her! Have to keep a close eye on how her health is for a while and watch for any developing signs.

Unity, now i've stopped sulking at my lost post, I'll try again. *grin*
I have a problem with any organisd religion (not religious myself,more spiritual) that's basic tenets are founded on guilt and eternal punishment/damnation for any behaviour that steps outside of that approved by the church. So that will be catholicism the. *grin*. Apologies if I've offended anyone.
on the subject of your onset of depression, I know a clinical psychologist who is a firm believer that this can stem from traumatic events to a child who is befofre the development stage of being able to vocalise their distress/upset. To extrapolate - it's also thought to be the base cause of subsequent self-destructive patterns of behaviour as emotional development at a sub-ego/id level can be arrested at the point of the trauma. Does that make sense??

I had to go for Tilt Test today to see if they could bring on and record arytthmia. Always makes me sick. Still, anything that assists weight loss *grin*.

suep

Careful_with_that_Axe wrote: »

Sue, sorry I forgot to ask about your Dad. The chemo has a sorta cumulative effect, so side effects tend to get worse towards the end of a course. Also, I think you get worn down after a while - we all know how that feels, right!
They're threatening to try a new course of chemo on me, but I've been looking it up and it's a fairly aggressive one, so I'm going to hold fire for a while and see what alternatives there are.
So sorry to hear about your daughter - how awful for her! Have to keep a close eye on how her health is for a while and watch for any developing signs.
.

Hi cwta, I hope you can find a less aggressive chemo, I never did ask Dad what he has, I havn't seen him much because I've had so many bugs since xmas and he cant be near anyone whos ill incase he catches it and has to stop the chemo, I speak to him on the phone, but its not the same is it.

As for my daughter, shes just upset it's interferring with her social life, she said if she has to stay in for another weekend she will die :rolleyes: teens are so dramatic aren't they :rotfl:
sue

sakara

Trialia wrote: »

Sakara, babe, it's good to see you over here! *waves and huggles* Like I said earlier, best of luck. Maybe try printing out a symptom list and showing it to them, might get through their thick skulls...

Thanks, all of you. I think what's frustrated me most about even trying to get proper treatment is that there seem to be so few professionals who have any idea about trying to manage FMS and comorbid bipolar disorder - let alone when said BPD is very atypical in its patterns, for that there seems to be no one in this country. :-/ It's... I don't know. If they treat one right the other gets worse, and it seems like they can't even get one to be handled at the moment. Frakking incurable conditions of crapness...

Heya!!! I am going to write out a symptom list and frame it i think cos everytime im asked "so what do you suffer from" i have to think..
"right how many conditions and symptoms shall i mention before their eyes glaze over....?"
:rolleyes:
Went to CAB today, got an appointment with the welfare benefit specialist on friday and they also recommended i apply for Income support, as otherwise i have NO other income coming in...itl be at a reduced rate..but hey worth a shot whilst i put in an appeal.
Seeing as i was already in town i did a bit of (cheap essensials) shopping, and went to the cinema as i have a cineworld pass (that ive cancelled) but is valid until the end of feb..so make the best use of it i thought! Make the most of the day......knowing tomorrow i dont have to do anything except use the phone!
plumb tuckered now....know tomorrow ill feel like dogs doodoo lol

fairydust07

Hi all!

I've been reading through the site for a while now and thought I'd introduce myself. It seems like a really friendly place to come for a chat!

Anyway...to cut a long story short, I was diagnosed with fibro a few years ago by one rheumaologist and recently things have become unbearable. I was then referred back and the new doc decided I didn't have fibro as I'm too young.

I had my incapacity benefit tribunal today and I'm really not sure what they're going to decide, I felt they don't understand my situation at all.

I hate being back in limbo! At least with the diagnosis I knew what I was dealing with!

Sorry for ranting!!

bigzippy

Jeez, you guys have been busy today with your long posts!! Right...here I go...!

kassandra wrote: »

Well I was in tears again this morning feeling so useless and crap but reading through the posts I was howling! :rotfl: Thanks for cheering me up!

That's what we're here for...although I don't think I contributed to this particular bout of howling

Hope you got it sorted with the head master Kassandra.

Kassandra wrote:

Although I must advise you don't do it in the bath!
Oh and before that is picked upon- No I am not a psychiatrist or an expert on electrics and its affect upon water. I'm obviously presuming that if being electricuted by power supplies in water happens to one person then it just may be possible for it to have the same effect upon another person in the same situation! :eek:

:rotfl: Nicely put!! :T

Suep I'm glad your dad's getting on with his Chemo and I pray that he'll get through this and be stronger and fitter than ever when it's over.

As for your daughter I think you're right to be cautious, but maybe be careful about her thinking that your concern is smothering...you know what teens are like I hope she recovers fully from the accident and has no lasting effects!

Kompess I really hope that you find the support and understanding you need on here, or anywhere really! I, as well as the others I'm sure, understand where you're coming from. I first started getting really ill when I was 24 and I found it so frustrating and debilitating to be so handicapped so young, it's something I struggle with still but nowhere near the level I used to.

The diagnosis (of ME and Fibro and IBS) was both horrifying and a relief when I finally got it. It meant that there was a reason for my symptoms and that hopefully I could get some treatment and understanding and start to deal with it. I hope that you eventually get to this point too, although it is a difficult point to get to and does often require an understanding team behind you. I found it very difficult to get past the idea that I should be fighting it (fighting, say, cancer stylee) and that "giving in" to the things I can't/shouldn't do in order to get on an even keel wasn't actually "giving in" to the condition - it was actually fighting it...if you see what I mean?

I was like Ditzy, especially before the diagnosis. I just wanted to sleep or slip into a coma til everything had been sorted out for me and I didn't have to deal with all the hassle and stress that comes with endless form filling for benefits or the endless tests etc.

Ditzy I'm the same as you with the cinema thing. I struggle to sit in one position for long and am partially deaf, so find the surround sound that just seems to amplify all the ambient & sound FX noises really annoying. I love being able to snuggle up at home with OH, some (cheap!) popcorn, and put the subtitles on on the DVD Bliss Plus I like being able to own the film cheaper than it would usually cost for us both to be able to go to the cinema...

Cwta, Raeh & Unity the dress I saw today was the same dress, so didn't take any more photos, but I did wander over to BHS and they had a range of bridesmaid and flower girl dresses that were the right colour and style and the flower girl dress is sooo cute for my 6yr old niece. Wanna see? We're gonna take the girls to try em on in the half term. There's some nice (but expenny!!) ones in the bridal shop too so we might try em in both...

Cwta how did the Tilt Test go? I'm sorry if you've mentioned before, but what do they want to put you on new chemo for? (Sorry if I've forgotten )

raeh

hello, quick post as coro has started

kompess thats one hell of a list thats why i never stop long enough to write it all down

unity i can remember before i was 3 as i remember where my nan lived and when she moved and i was 3 after she moved and i remember my sister being born and i was only just 3 then
i also agree getting up when its light makes a huge difference to mood but for me the effort of going to work doesnt give me time to mope i know mine is a genetic disposition though :rolleyes: well all that means is i have made sure it doesnt get me as much as it could
also having a catholic father means im well aquainted with the guilt tattoo
the lush bags are in all stores but i did have to ask for mine, iv complained about mine though as i had no where near the £50 in it that i should have gotten

sue im sorry im another one who didnt think to ask about your dad i hope the symtoms ease soon if its almost finished and thats its had the desired effect also i hope your dd is ok with all the stress you have recently i hope you are looking after yourself

kassandra, im glad we can make you laugh keep coming in as we have a great atmosphere even when im in a whingy mood good luck at the school, give them what for and with the letter i hope they can see how neccessary it is for you to park closely.

CwtA im sorry you are looking at more chemo i hope you are right and there can be alternatives xx im a bit that way with religion myself and i think its due to a catholic upbringing of sorts

bz where are you with those photos

not quite the quick post i intended was it?? iv always talked too much and i seem to type too much now :rotfl: im sure there was more i wanted to answer but each post has blended into the next

bigzippy

fairydust07 wrote: »

Hi all!

I've been reading through the site for a while now and thought I'd introduce myself. It seems like a really friendly place to come for a chat!

Anyway...to cut a long story short, I was diagnosed with fibro a few years ago by one rheumaologist and recently things have become unbearable. I was then referred back and the new doc decided I didn't have fibro as I'm too young.

I had my incapacity benefit tribunal today and I'm really not sure what they're going to decide, I felt they don't understand my situation at all.

I hate being back in limbo! At least with the diagnosis I knew what I was dealing with!

Sorry for ranting!!

Hi Fairydust and welcome :wave: glad you've come in to join us
One thing I need to pick up on "the new doc decided I didn't have fibro as I'm too young"...erm as far as I'm aware, from what I've read and been told, there's no age limit to Fibro! Children have been diagnosed with it! I would challenge it if I was you chuck... especially if it's making you feel uneasy not knowing if you're coming or going...?

I hope you get somewhere with your tribunal and they see what you're struggling with. If not though, take heart that there are still other options available, even if it is the last thing you feel like!!

raeh

bz you snuck in whilst i was typing those bridesmaid dresses are beautiful very similar to the butterfly ones my sis had from next, they were a bargain compared to bridal shop ones and looked gorgeous on

welcome fairydust07

bigzippy

raeh wrote: »

bz where are you with those photos

I was here all along...doing a rather long post!!

P.s. Cwta re: antirobotics...it's the last day today :j