Sticky Blood-Hughes Syndrome Support
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DLA Renewal

My Dla renewal pack has finally arrived I will start filling it in soon. Although I get middle care rate I am really looking to get the mobility element as well this time as my legs are deteriorating and I can't stand or walk for long too. I'm awaiting recent blood flow tests, my joins are so stiff and even when i move in my sleep I get severe cramp that makes me cry. I also get petechiae (bleeding into the skin) if my legs are overworked. Its a bit of catch 22 as I need to keep moving for circulation to be good but it hurts to move too much. Does anyone else have what I have described I wonder? Every day I have symptoms of some kind but my legs are consistent and hurt every day. People that know me ask why Im so positive about being ill but this is my life I know no difference I have been ill for at least 12 years that i know of (only diagnosed 3 years). The best thing that happened to me is being diagnosed because a) It put all my self doubt to rest b)knowledge is power. I try to educate almost everyone I meet about this awaful condition and hope one day people will recognise the disabling aspect to this health problem, as even people that know about Hughes seem to think now Im on warfarin I should be better. i accept that Im ill and I will manage it as well as I can with my Health Professionals I just want people to accept Im not going to be better and thats not me being negative (Im very much a half full cup) thats me understanding what is happening to my body.

7 Replies

Hi hon,

sorry to hear your legs so bad, yes do have similar problems with legs and extremely sore feet. I have to use stick, wheelchair and mobility scooter at times.

I too have to keep a smile on my face and keep positive most of the time.

Ref dla you have to have problems walking less than 30/50 metres i think, causing extreme pain, dizziness etc. And don't tell them what you can do, stick with what you can't do. It's also always a bad day! I know all of this sounds wrong but is only way. I hope you get on ok with renewal. Try Cab or welfare rights for help too.

I hope feelin well today,

Take care gentle hugs jessielou xxxx sheena xxxxx :-) :-) :-)


Hiya, having just read your blog about DLA renewel, you need to listen to what jessielou says. When I was applying for DLA it took me 18 months and 3 appeals before it was granted. I started off with pain in both feet and calves and eventually went on to lose both legs. Please dont let this scare you at all because it only happened with a very very late diagnosis. I had lost my 2nd leg before it was finally granted. What I'm trying to say is, however much pain you are in, multiply it by 10 on the forms. As jessielou also say's, it may sound wrong but its the ONLY way. Think about each answer before you fill it in. I hope you get it sorted very soon. Keep us posted.

Carol x


Thanks you two i have been through two tribunals and hope to avoid one this time the funny thing is I helped my friend who has ms get high mobility and care. I've been told i could lose my leg in the future I've had so many tummy ops and disabling pain but the legs do bother me a lot I was diagnosed late as well which meant more damage wad happening.I'm in the process of gathering info for the form and hoping to be seen at st thomas soon a bit earlier than my scheduled appointment.Carol did you have bad cramps and bleeding before you lost your leg ?I would really like to hear your story and you can private message me if you prefer.Jessielou this site is fab for us all to share and thanks for your support x


Hi hon

you welcome, is great we can all be here for each other.

Can be so stressful going through dx plus getting support, the right meds, then financial help and all that on top of a horrid illness like Aps.

What a remarkable bunch of people we all are boys and girls!!!

Hope all well

gentle hugs jessielou xxxx sheena xxxxx :-) :-) :-)


As Sheena has said this illness can take its toll but having a support network to help you can make the diffrence i really hope things turn out for the best and sharing ideas and points of view will help


Hi TJ, I'm currently under a pile of blankets suffering with Trigeminal neuralgia.I was gobsmacked as I got higher rate for both from lower rate with no appeal just straight award! When I think of the tears and agony to get the DLA in the first place! The difference was, I asked someone else to fill my form in. I included a copy of every doctors letter and test result since my first claim then I sent a copy of everything to St Thomas' and asked them to add their bit.It's right about thinking of all things you can't do anymore. It was a really dear friend who helped me, and it was a very painful 3 hours.I've only been in receipt of dla for a couple of years and only had confirmed brain damage since June although I have obviously known I'd had a lot of problems beforehand so putting it on paper no holds barred was really raw. I don't know what worked but right now I am so glad it did. As I'm getting ever closer to having to stop working, I just can't do winter-the slightest chill or breeze seems to trigger every nerve in my body. I know what you mean about the legs too, where do you find you get the bleeding? I have huge areas behind my knees and mid thigh after a day out and about (preceeded by acute pain) but mine aren't anywhere as bad as yours sound, and what's the link with abdominal surgery?

Keep smiling honey, we're all rooting for you

Love Sharon x


Sharon I get the bleeding above the ankles and the lower part of the calves I have loads of pics to show St Thoms and the Dla people as it comes and goes but is getting more frequent. I too strugle with work although my employers are very supportive there is probably only so much they and I can both stand. The tummy ops are related to Hughes although I did not know this at the time, I got ill following giving birth and six weeks after having my second child I was in intensive care as I had had a bowel resection, at the time I was told my bowel had burst and they did not know why, I now know I had a clot to the bowel causing it to burst.


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