Hypermobility syndrome, arthritis, fibromyalgia?? General chronic pain?

[dark faery princess]

Hi all,

I have suffered from chronic joint pain for 9 years now. I have hypermobility type ehlers danlos.

Just wondering if anyone else has any simialr problems? Thought maybe we culd have a support thread if there are a few of us. Unless there already is one and I'm blind!

So... Anyone?

[pea soup]

hi there,

i was diagnosed with fibromyalgia about a year ago. im not sure how many folks around here have chronic physical pain...but i guess we can wait and see how many would like to join :)

[Mrs Sam]

I have hypermobility too. It doesnt affect me day to day but my joints crack a lot which hurts and also when its cold my joints get really sore. I also have a wrist support which i wear sometimes as they're affected the most. Especially my right wrist as i have a ligament tear in there which flaps about and makes it difficult to move. I also can't step up big steps or jump of walls as my knees just give way. They did test me for arthritis as most of my family has it but i didnt have the Rh factor. To be honest it was never fully explained to me i was just given a leaflet on hypermobility and rheumatoid arthritis and sent on my way with some anti inflams!

I did make a thread about hypermobility years ago but there were no other sufferers!

[Margo]

I heard certain "herbal" cigarettes can help. Not sure if this is true or just myth?

[MissAnonymous]

My friend has ehlers danlos hypermobility [hers is a hereditory/genetic problem], shes had a lot of problems with her knees and feet so far. For pain, I have heard that certain 'herbal' cigs can help, but its obviously not prescribed. >.> I wouldnt touch it though, it will make your mental health worse in the long term.

My dad has bone deformities/spina bifda sp* and therefore chronic pain. Have you tried a tens machine? My dad find it helps a lot.

I know how much chronic pain can affect mood, when my dads been laid up for weeks he gets very depressed. Do you go to a pain management clinic?

If this thread doesnt take off you can always PM me instead, or PM me anyway!! *hugs*

[pea soup]

yeah, those "herbal" ciggies are known to help but they make me sick to my tummy, plus theyre illegal here


i used to be on pain management but within a year, i was addicted. i dont reccommend it at all. narcotics SUCK!!! for me anyhoiw....

[dark faery princess]

Hi guys,

Sorry to have started the thread and then not come back! It's interesting to see that there are a couple of us!

Mrs Sam, I wasn't given a huge amount of info either, or i may have done but ignored it as when I was diagnosed i didn't wanna know! (I was 12).

I too have wrist supports, one for each wrist and I go through periods of wearing them regukarly. I'm planning on getting one of those parafin wax hot bath things for hands becausemy hands have beenso painful reecntly.

Miss Anonymous, that's what I have the Hypermobility type Ehlers Danlos. Hereditary n all that.

Its weird, cos when I was younger mymum was constantly sending me to appointment after appointment to get me properly diagnose and see if there was anything that could be done about it. But of course there is no treatment for HMS really so it all amounted to nothing really! Well not nothing, I went on a pain management course which was quite helpful, but no cure!

If anyone comes back... How is everyone?

[Bleeding Angel]

I know my nerve pain isnt the same, but i really hope you find something that helps, and i do admire that youve managed to get on with things while being in pain.

[zivalover16]

i have a chronic pain thing.. We are trying to figure out what it is. They are thinking I have a connective tissue disorder :(

[Kahlia1981]

I have hypermobility but have never really been given a type although it has been since birth. I was also blessed with a birth defect of spina bifida occulata (thankfully the lightest form). I have chronic pain - have had for quite some time. I'm on narcotics and NSAIDs for the pain and seeing the Pain Management Clinic at the local hospital but not holding out much hope that it will improve.

[dark faery princess]

Hi all,

Mari your pain is still there, and its been going on for ages, so it still counts!

Hiya Ziva - hypermobility is a connective tissue disorder. I hope you manageto find out what it is and get something that helps you.

Kahlia - you don't always get given a 'type' with hypermobility, it's only when it is a part of ehlers danlos that you get a type. For example I have hypermobility type ehlers danlos which is aka EDS III. So type three. You can just have plain hypermobility syndrome.

An interesting thing that some of you guys might wanna be aware of. I have recently had a blood test for coeliacs disease, and I'm going to have an endoscopy soon to confirm it, but apparently coeliacs can cause joint and bone pain as well as muscle cramps.

Whether or not you have coeliacs, going gluten free might help.

Hope everyone is ok.

Oh and Kahlia, I went on a three week residentil pain management course. I didn't think it was going to work either. Ok, so it doesnt take your pain away, but it might help you cope with it. Just try to be open minded about it, but don't expect miracles... If you wanna PM me about it, then feel free

x

[Kahlia1981]

Thanks. I don't think I'd be so .... anti Pain Management if it wasn't for the city that I live in. That may sound a little weird but we have some of the worst health care in our state in this city. I also really distrust physiotherapists and OTs (OTs because I spent almost 3 years training to become one) and I'll have to be working quite closely with them. I am prepared to give it a go and I'm hoping that it might help me to better cope with my pain, but you are definitely right ... I don't expect miracles.

[riley.]

i've hypermobility & polymyalgia rheumatica

I havent been diagnose with it but i think i have fibromyalgia as i get very tired and in pain a lot of the time