Fibromyalgia

Hi everybody,

I have not been on for quite awhile as i have not been too grand. The only good thing that has happened has been that i have become a grandmother for the first time on June 10th.

I have been to the pain clinic which was a waste of time as the leader in the pain clinic was also a fibromyalgia sufferer and she didn't know how to cope with the pain. I have also been put onto anti-depressants to try and give me a kick up the backside. Sometimes they work sometimes they don't.

I was just wondering if anybody had any luck with DLA. I have just been to an appeal with respect to DLA and they once again turned me down, even though i can only walk about 10metres on a good day, there reasoning was that i could weight bear on my legs and i don't use any aids to walk with. I cannot walk with aids as my hands are too sore and my shoulders.

Going back to my new granddaughter the leader at the pain clinic told me that i could not hold or babysit my granddaughter due to the pain i am in afterwards. My granddaughter is the only thing that is keeping me going at the moment.

Hopefully everybody is keeping well. Look after yourselves

Hi Destiny

Congratulations on becoming a grandmother. I also am a grandmother to Molly who is nearly five and another granddaughter due end of September.

I find that Molly will help take my mind off the pain when I look after her.

It is so unfair that you are unable to get disibility allowance when you can't walk very far. :cry:

I have only been coming on here since June when I was told I had fibro by my rheumatologist. Think I have had it for about 8 or 9 years though.

I am having more trouble with osteoarthritis in my toe at the moment and need to see my doctor about that. I have been unable to walk to far only for a couple of weeks and thats annoying.

Well take care

Love Jane x x

Destiny, Hi. Congratulations on becoming a grandmother, and Squires, my granddaughter is also nearly 5 - on September 16th. she starts school this year.

Anyway, back to the DLA. I was refused it at first and I went to the CAB the next time, boy, I learned a lot. Apparently walking is not essential to life, that is why you tend not to get it just because you cannot walk far. I didn't either.

When I was finally awardd it I got it based on the fact that I cannot prepare and cook a meal from scratch without help. That is deemed to be essential to life. Another one is whether you can wash, dress and toilet yourself. For the mobility component I get it because I cannot go into an unfamiliar place without someone with me.

It is strange what they base things on but the CAB are brilliant. They help you tell it like it is because they know what the DWP are looking for.

HI Destiny,

DITOi can only walk about 10metres on a good day, there reasoning was that i could weight bear on my legs and i don't use any aids to walk with. I cannot walk with aids as my hands are too sore and my shoulders.

A submission by the practice doc (not Mine) said I use crutches I use one crutch as I can't use both as my shoulders are so soar it doesn't really help as it just takes a bit of the pain off my left hip!!!!!!!

I think that those people that are on the panel do not read into how our condition effects us as some doctors do not believe it exists and I think this is why we do not get the help and support we need, I am entitled to the meal criteria and that is that...... if you cannot cut or peal the vegetables how can you do anything else????? cant wash my hair due to my shoulders lifting my hands above my head have to get my husband to make sure I have got the soap out of my hair, can't bend forward as my hip locks and I get pain in my back!!!! I think they think we are just story tellers...... I broke down and said I would love to goto to work and do normal things but I couldn't even get up the stairs without one side of my body going numb......... takes me half an hour . On a good day if I want to goto the local shop it is 0.26 of a mile can't convert it as it was on route finder lol....... , and yet today I see the woman up the road run to her dla car and get in it with no hassle......... these people make it harder for genuine people......... I have seen seven different medical fields and only three listened to me MY GP,physio and Pain consultant.......and I have 18/18 tender points.

Why do we have this battle? because there is not enough knowledge about this condition even though NHS DIRECT EVEN SAYS:-

There is no cure for fibromyalgia, but treatment aims to ease the symptoms as much as possible. The condition can be treated using a combination of medicines, complementary therapies and lifestyle changes.

Anyway Gentle hugs to you all .....

:cheerup: