HMS is EDS III (confirmed at HMSA conference)

snoop2008

I am at the pain clinic today 11.40am, so it will be interesting to see what my consultant suggests regarding treatment now he has my report from the rheummy!! I read somewhere in the info pack that fribo is associated with HMS yet another related condition.

snoop2008

Well I had a very interesting chat with my consultant today. He said HMS/EDS can cause so many problems due it's nature and he explained the spectrum which I had limited knowledge about. The visual problems he explained can be due to blood vessels which is also associated with EDs. He said it is not differcult to rule out as EDS affects collagen, tissues, protein, ligaments, muscles, joints and organs but to varying degrees. I showed him what happens to my fingers when I grip my walking stick and he said due to the overworking of muscles and loose liagments my fingers were not normal as suggested by the general GP. He also aknowledges that the injections given by the dentist could have triggered off the bad reactions I had. As a complex condition any joints can be affected and painful.

As I am very sensitive to meds, he has referred me to C.O.P.E centre of pain education. A programme thats helps folks manage chronic pain without meds. I was so happy about this as they will teach you how to move and manage my joints on a daily basis. He said it does not take the pain away, but teaches how to manage it.

He has also made a referral to the Royal london hospital for intergrated medicine as I am into alternative theapies. so now I have to wait, could be several months but who knows!! I have lots to learn about movement as every day living is virtually becoming differcult due to spasm, muscle cramps,sprains and joint pain.

Anyone interested in this type of programme here is the link

http://www.epsom-sthelier.nhs.uk/our-services/a-to-z-of-services/speciality-medicine/centre-of-pain-education/

Adaline

jazabelle wrote: »

I'm seeing Professor Grahame in January.

Anyway, very much looking forward to seeing Professor Grahame and also Professor Davies at the Fibromyalgia clinic who I'm seeing in January.

Hi Jazabelle, Professor Graheme is great. He diagnosed me almost the moment I sat down, because of the way I rested my chin on my hands, with my fingers bent back! He was very supportive and sympathetic, and responded very quickly when I wrote to him after the consultation with some questions. I hope all goes well for you.

jazabelle

Adaline wrote: »

Hi Jazabelle, Professor Graheme is great. He diagnosed me almost the moment I sat down, because of the way I rested my chin on my hands, with my fingers bent back! He was very supportive and sympathetic, and responded very quickly when I wrote to him after the consultation with some questions. I hope all goes well for you.

Haha, I'll have to go in and put my foot on my head then! My fingers go back as well.

Thanks for that - after I got my appointment through finally, I read a review on the internet that he was incredibly dismissive and rude, so I've been worrying since. Hopefully he was just having a bad day, because I've read lots of people say he was nice.

jazabelle

snoop2008 wrote: »

Well I had a very interesting chat with my consultant today.

Glad you got somewhere at your appointment and you've got referrals. Hope it helps you!

helen6

since you are the only people who understand hypermobility I want to ask if there is any point in appealling after failing a dla tribunal. I am sitting here in tears feeling like ending it all. I am too much of a burden on my kids. it`s not just hypermobility because I`m older I have arthritis everywhere, sacrialitis, cervical spondylosis metatarsalgia and ibs. I know I should have got help from cab but the one in my town closed and then when it reopened it was so busy I couldn`t get an appointment

cally6008

definitely appeal but do get help with the appeal .. do u have a welfare rights place in your town ?

JJ7

Helen6,

I really feel for you, be assured that you are not on your own. I don't have the condition mentioned on here but I know what it's like to struggle greatly and feel a burden to your kids. I hope you can summon the strengh to appeal and as cally6008 says, get some help with it.

Good luck

helen6

Thank you both. I think the doctor who did the medical and the board at the tribunal are just out to save this tory government money. Everybody that knows the pain I`m in and the dislocation problems with hypermobility cannot believe the decision. I will go to cab for advice but because the new office they opened up is in an out of town shopping and office estate which I will have to rely on my kids to take me to or get a taxi

Trialia

I finally got in to the connective-tissue disorders clinic at MRI! I have an appointment November first. I'm really looking forward to seeing someone who knows what they're talking about.