New to Fibromyalgia

Hi Debs, I also get DLA - but only the lowest level - having fibro does not automatically mean folks will get it - it is not disabling in the same way as having arthritis for instance .. I also have arthritis in hips and spinal stenosis(that is what get it for as my walking is now very limited) - but couldn't get a higher level - from last year it has been getting much harder for folks to claim, perhaos rightly so, as lots of folks I know have no real problems but do tend to make up stuff and get DLA (not fibro folks I mean) .... I managed to work all my life until I retired a couple of years ago, yes, even with the spinal probs .. and having worked with young teenagers who had no intention of working, I guess I am biased and pleased I retired as I just wanted to give them a kick and say 'Hey, i work with my disabilities and pay your benefits so go get a job' !!

I am 66 now and worked for local council education department youth service and get £41 a MONTH pension - a joke !! Although I am now worse I cannot get DLA upped and beware, as ALL DLA claiments will be gone through at some point over the next year or so by the same ATOS folks who did the invalidity benefits ...the online self help group I run also has some excellent literature about these and lots of help

As for bladder probs - my prob is needing to go too much - there is a word for it but can't think of it - fibrofog lol ...

We have an 11 week old Staffy pup - our last one died 5/6 years ago and we said no more as we both are very limited in walking, but you do miss a pet don't you ? So we now have little Lucy and we will manage to excerciss her somehow !!

OK - that might be me off for today - hands do ache and burn when typing too much, but that will wear off and perhaps return tonight when I want to do some stitching

Val x

Hi everyone. Still not smoking and feels soooo good. Tis a problem when you do enjoy smoking, I know I always have but with my electric cig I feel as if I have had a cig but without the pong.

I also am on ESA and the lowest DLA. It wasn't easy to get and am sure I wouldn't be receiving it if it wasn't for all the fantastic help I received from my local CA service.

I have already noticed a difference in my money now I'm not buying cigs, Hopefully will be able to get a matress soon.

Bumped into an old work mate (not seen him for ages) he couldn' t believe what has happened to me. I went out for some fresh air and although I try not to walk like a chimp sometimes it's unavoidable. Feeling a bit down now I've seen him, it reminded me of how strong and active I was (would give anything to be like that again). I use to be a tiler and plasterer and had my own business so feeling a bit sorry for myselfe.

I did hear of someone who had hypnotheropy and cured their Fybro. What do you all think, worth a try or another false hope?

No, to be honest I do not think hypnotherapy would help - I am a Reiki therapist, but only ever tell folks the least they can expect from a treatment would be a lovely relaxing time which carries on after for quite a while .... when we are relaxed and d-stressed then our bodies are more capable of handling situations and pain .... but I would never ever say Reiki cures ... Ohh a tiler and plasterer - I could do with you living near me lol ... I can no longer wall-paper or even paint the walls as my arm muscles just scream and burn then, so have to either get someone else to do it, or take a bit at a time which is like painting the Fourth bridge - get to the end and it is time to start again ... lol

Val

Hi,

I have been doing some mindfullness meditation and this week I started tia chi, all in the hope that it will improve my quality of life.

Hi Lizy, sounds great. Always been sporty, miss it so much. Never done tia chi, how did you find it?

Hi Linda,

I hope all is well with you? I haven't been on for a long time as life has just taken over.

Hi Twiglet, I was very nervous about going to tia chi as I hate groups of people. Tia chi itself was fine, its a very slow art and it doesn't require any heavy stressful movement so is ideal for people who have muscle and joint problems.

lizy

Mindfulness is excellent and one of the things taught in Reiki.

Hi all, just woken up from my afternoon nap!! Just can't cope without it. But then I'm always awake early and go to bed late. I live alone, (have 4 boys, all grown up and all working apart from my youngest in his last year of Uni) so, I can suit myself.

Oh fibro fog!! drives me mad! I've already spelt 3 words wrong and had to correct them!

Bit, like finding the fabric conditioner in the fridge!! Does anyone else do things like that??

a puppy how lovely, but hard work, how's the house training going?

I have a dog flap, so the dogs go out when they want. and they wear themselves out playing and charging around, so don't need to be walked, one reason i choose shihtzus.

The joy and pleasure and love they give me is amazing and it is a reason to have to get up. they are all such different characters, completely bonkers and are always making mr laugh!

I'm on high rate DLA, due to my back. As you say the upcoming shake up, will sort the wheat from the chaff, as they say. i'd still say try for it. but you have to fill the form in with help and put how you are on your very worst day. I can't go out unless I'm in a wheelchair. i have the most brilliant carers that come in everyday, They adore the dogs, i think they give them more attention than me! Lol!

I've just had my bedroom decorated. Had to save up for that, costs a fortune! Years ago, I could do it myself, so it's so frustrating not to be able to do anything. I love interior design.

I used to go swimming which is good because the water offers you support. But then it got too much for me, getting undressed and dry and dressed again. It's exhausting and painful.

As for hypnotherapy, 'being a cure'. There isn't one, so I'd question if the person really had Fibro??

Of course, anything that helps you relax and cope with the pain

Debs

i have a memory foam mattress and pillows. They do help me, although expensive, I think they are worth saving up for. I'm an avid Ebayer and love a bargain!

Hi, Lizzy and everyone else! I`ve not been on for a while either, things have not been good with my husband, mum and extended fanily. I`ve had fibro for several years now, I also suffer with depression, migraines, acid reflux, under active thyroid and for about ten months osteoporosis. This was diagnosed when I was x rayed for severe back pain, which found a crush factor in my spine due to osteporosis. So been worse this year. I find my pain etc much worse when I have a migraine, and recently am being investigated for a sleep disorder as the chronic fatigue has been awful, I can even fall asleep with a cup of coffee in my hand. Not nice!

I also have memory foam mattress and pillows, Deb, and like a bargain on e-bay! I have tried twice for DLA and been turned down even with GP support. My husband receives it and also has a blue badge, I am his carer, which can be hard at times.

Well, will try and get back on again soon, must go as my daughter is taking me to the Knitting and Stitching show today, I must say that my crafty hobbies keep me going!

Take care, Linda

Hi all. I think this is the problem with the F word, it affects people differently. Although I get most symptoms (including agonising pain in my jaw) I don't suffer with migrains.I feel lucky because everything else is hard enough to cope with. I've always had to push myself to the limit and beyond because of the career I chose. It was such a demanding job . I am 5ft and at the time I was working hovered between 6 and 7 stone. I used to eat all day and get up at night and eat and still lost weight but I loved what I did and got a lot of satisfaction from it. My point is that I am no means a whimp and still feel the need to push myself more than I should even though I know I'm going to pay for it. To me it is worth it because it is the only bit of my that is left. However I know some people do exagerate their pain whether they have the F word or not. So after saying that, the lady who said hypno cured her may have had a dodgy curry.

Hi Twiglet, I'm with you on the need to keep pushing myself ..... and yes, I also do lots of things I really shouldn't and know I will get the 'payback pains' for a day or so after, but what else ? Sit on my bum all day and do nothing ??? That really isn't me ... if I am in pain sitting then I might as well be doing something ... it ain't going to go away is it?? I am just over 5 feet tall and also used to be soooo skinny - but that was before I hit my mid forties and now in my late sixties I finally have more weight when I don't really want it

Ohh Linda - the Knitting and Stitching show ?? My sister lives in Norwich and her stitching group went on the Friday ... I live up here in the North East and used to go to the big Harrogate one every November, but can't do the walking round such a big show anymore even though I used to take regular pain killers through the day ... really hurt my hip and back even with the stick ... so this is the first year I won't be going

I am another ebayer bargain hunter !! I also used to make jrwellery with real gemstones and real silver but found it hard to sell on there .... I have a few sets left so might put them up as xmas is looming ... I do have them on my facebook page if anyone is interested, just send me a friend thingy and you can then get to my albums ... I think I just come up as Val Blench in the search ...

As for memory foam mattresses - I couldn't afford the full mattres but managed to get the one which goes over your own mattress - forgot what you call that now ! but I sometimes find it too hot and I prefer a cool bed ... but id does help my hip and back ...

Little pup is coming on great, only had house training probs for the first two days as the owner of the mother had got the pups used to using a puppy pad which was great .... she also goes all night long in her cage and does nothing - so that is great ... she is just 11 weeks now and had all her injections so can start taking her out now ... yes it will make my legs hurt and especially hip and back - but better than doing nothing and it gets me out !

Hope everyone has a good weekend ... I am off for now as little grandson comes over to see us on Sundays for dinner so that will deffo tire me out

If anyone is interested in the online support group for fibro, or the online cross stitchiing group I also run, please message me here

Val x

Hi all, jut a quickie. rough today, think i have a chest infection. Yuk!

I would urge you to try the sumatriptan for migraines.

The jaw pain is TMJ most likely, Gabapentin or Lyrica really helps that and don't eat anything to chewy.

I am also, Bipolar. and on high doses of medication for that.

If you picked me up, I'd rattle!

Glad to hear the pup is doing well.

I raw feed my 3 dogs.

One of them had a bad yeast problem, when he was a baby. And the vets were making him worse, pumping him full of steroids and antibiotics.

So, after much research, I took things into my own hands. Stopped them all and took them off commercial dog food. There are horror stories about that.

And after much research, I don't give them booster vaccinations either. or, my cats.

And they are all, so healthy now.

I use a lot of white vinegar, for everything.

and take ACV every day. Apple cider vinegar (Organic, with the mother in.)

memory foam toppers are really good as well. And are a much cheaper option. i would advise anyone to get one, they do make a difference.

Sorry, if I'm rambling. Got to go for a nap now.

Debs x

Hi all,

Thanks for the diagnosis Debs. How long did you study medicine for? Must be difficult to be able to help others yet be in so much pain yourself or are you talking a load of shitsu?

Hi Everyone! Good to see you both on Lizzy and Linda. I haven't been on for a while been busy etc with fsmily. Hope you are both doing ok. Liked the old site better! Take care all! Tess

Hi All,

Just passing through so having had time to read everyone's post, sorry.

Just wanted to say - anyone with FM should have their thyroid checked- your doctor won't want to, but persevere. Majority of FM is - I will even say 'CURED'..!!! - with thyroid medication: in fact, I know I've become thyroid under-medicated if my FM returns.

If you do searches on thyroid and fibrom you'll find some helpful stuff.

I wish everyone luck, I know from bitter personal experience your doctor may well totally baulk at the idea and then, even if you get a thyroid test, your battles are just started (you'll see this from all the literature/forum postings what a nightmare hypothryoidism/Hashimoto's is). All I can say, is do persevere, I am now completely pain free and I take no painkillers.