CRPS/RSD SUPPORT GROUP

[JannettG]

Hi everyone,

I have been a member for a good few years now but due to my particular illness I have not had much time nor remember to come online. Seems it is not just parts of my body that is not working, but my memory is also scattered!

Not to rant, I am asking this question because seeing the responses to different posts I think that there is room for a more substantive group to assist people with pain and especially with the neuropathic types of illnesses.

I have a CRPS disability. It is constant pain in the bottom of my feet and also the tops. The pain started on my right foot/ankle and then has travelled to include my left foot and both legs hands and arms and fingers.

PLEASE CAN ANYONE contact me if they feel they could help with the establishment of a support group for RSD/CRPS?

I notice that there is much in the way of support when death is the expected outcome but for people whose illness is not immediately apparent or visible, there is nothing in the way of support available.

If you feel like I do, and want to see a change in the way we are treated or considered by the public. There has to be a way to enlighten or educate them of the daily difficulties sufferers experience. Without public awareness, there is little help or understanding.

Also there is little in the way of a standardized treatment for people who may have this type of illness and for it to be recognised as soon as possible.

PAIN is no one's friend, but why wait for months to determine that all the different attempted treatments were just a waste of time?

I would really like to get some assistance and i look forward to hearing back from some of you more experienced individuals on this forum.

Thanks for your time and I look forward to hearing back from you in the near future.

From a fellow CRPS sufferer.

Jannett Graham

[poormother]

Hi I to have CRPS and was diagnosed with it 6 years ago following failed ankle surgery. I have it my right foot and ankle but spreads to other areas too. I belong to a pain clinic and club but not one that specialises in CRPS and I have not actuallymet anyone who has this condition even tho I know of 2 other people. It has changed my life so much and I take mst/oramorph for the pain. It would be good to have a designated group just for CRPS. as the pain club I belong to does not have another member with this condition for me to talk too, as I have anxiety, depression and severe aloydinia as result.

[JannettG in reply to poormother]

Hello poormother,

I have been searching for a support group as you probably read and I have since found such a group which I am totally happy about.

burningnightscrps.org/

I have been all over this site looking at the information provided and also what help there is out there for people like us.

I hope to see you on the forum...

Bye for now

Jannett

[crpsSucks]

Support lol...

Last month was without a doubt the toughest month of my life, I'm still trying to wrap my head around how bad things got. Which shouldn't have happened:-

> I asked my GP for a referral to a pain specialist back in March when GP couldn't prescribe stronger pain meds. The pain specialist was useless no only disagreeing to give me stronger pain meds, she even criticised my current medication. She did insinuate that I was an addict, or at least a drug seeker.

> I told my GP that I was having suicidal thoughts in late June. I did try to take my own life four years ago and know my triggers (feeling isolated, not sleeping & not being able to work), they were all very much in play. I've still had zero mental health support (ever!), despite my GP recommend that I volunteer to be sectioned (MH Dr just thought I was just after more pills), and a week or so GP not letting my leave the surgery or else being sectioned. The reason I'm on stronger meds now because it's a better alternative than being sectioned & given anti-depressants.

The stronger pain meds (Fentanyl 50ug/hour) are working better than anticipated.

Friends of mine have recommended that I start a blog about my experiences (all but one friends/ family know how bad things got). There is charity specialising in CRPS, but there online community is pretty dormant (it doesn’t work very well & loads of spam)..

I have a technology company which helps people build websites.

[debsreed]

Hi. I'm starting support groups for CRPS in Edinburgh and Fife through a charity called burning nights as there is nothing in Scotland. Please look up their website loads of info and you can call for support and email others etc. If you want to start a group in your area ask to speak to Victoria our founder n double amputee due to this disease. We must raise awareness of CRPS it took me 12 being told l had a mental illness being dismissed misdiagnosed and discriminated against before l got my diagnoses of full body crps after my new GP got me appt see rheumatologist and she told me crps since a serious car crash l had in 2001 so l'm past any treatments now and mental health team are concerned how l have been neglected especially when l've never had mental disorders, anyway all the best fellow warrior. My Facebook is Crps Debbie it has some info and odd funnies too l need a balance between crying n laughing. God Bless, Deb.

[movingforward9000]

Sorry to hear about your situation. You can check rsd.org for a list of support groups near you. Best to call first before going since I tried to go to one and found it is was not happening due to low interest. Good luck and hope you are feeling better. There is a convention for RSD in Texas shortly.