Hi I am from kent , uk and was wondering if anyone knew of anywhere where people can go and meet and talk to other people with em . I am so desperate and lonely with this and feel like nobody else understands. It would be great to set up meetings where people could go and exchange stories and things which help/ or make things worse. So if anybody knows of anything like this I would be very interested . Thanks x
Hi Kate. Bless you. Just a quick reply. Answer is no. It is wonderful that you have at least found this site and joined us.We share stories and offer support to each other on here- we come from all over world. There are so few of us 'Em'ers' or so few of us get diagnosed..... we are not too sure.There are two other small online sites to my knowledge and TEA- an American association for EM. (Attached plus some information to star with).
If you wish give me your phone number and ill call you - Hey you can question, cry or just offload - I totally understand how you are feeling.
I am adding you as friend to keep phone numbers private.
You are no longer alone dear friend.
God bless
mads x
369-TEABROCHURE.pdf (130 KB) 370-EM.HurtBlocker.Newresearch2012.pdf (235 KB)Thank you so much for your kind reply. Yes I have heard of TEA and have done lots of research online. It’s so hard finding something that helps ! Oh how awful this illness is! Thanks again and I will defo be in touch xxxxxxxx
Dear mads,
I have just noticed your attachements! Thank you very much I will have a read through xxxxxxxx
Dear Kate, You are welcome.
Please let me know if we can help or support you in anyway- more research, phone call etc...
EM is wicked. Whilst no known cure- 2 new drugs for refractory pain in pipeline- however, these are few years away but still its light at end of tunnel.
Stay strong -there are many treatments and medications you can try that may help you better manage symptoms. Also avoidance of 'triggers' such as heat, exertion, stress, weight/pressure, fatigue , stimulant foods ie: caffeine, spicy etc...can minimise flares
Ill send you some information that may help. In UK it is best to go the pain management specialist /clinic route as they tend to be more aware of EM in terms of recognising symptoms, diagnosis , and disabling effects. They seem to be more compassionate and more proactive re: different medications
Have you been diagnosed?
Are you on any medications at moment?
God bless
mads
Thanks mads,
Yes I was diagnosed about 3 years ago and am currently trying lyrica 75mg twice day . It helps a bit but only if I don’t do anything then when I go to do something they flare Hoover for example. I am trying get amertryptline/ ketamine cream as I recently tried amertryptline and I think it was helping a bit but it have me terrible anxiety and anxiety is something I used to suffer very bad with so I don’t want to go down that route really but I thought that the cream may help a bit. I don’t think they will prescribe it in the uk though. I’m just going throgh the trial and error for meds really.
Thanks for your help and kindness xxxxxx
Hi Kate,
Stuff on treatments
God bless
mads
368-THEMEDICALTREATMENTOFERYTHROMELALGIADrCohensresearch.htm (19.3 KB)Thank you mads xxxxx
Hi I am in kent and have had no success with treatment what hospitals have you been referred to and have you had any luck with treatments?
Hi I am currently being seen by rheumatologist dr Ong at the royal free hospital. At the moment I am going through trial and error stage with medication. I am on lyrica at the mo think it works a little but not enough for me to do thinks like hoovering or too much excertion. At the moment the only thing that really helps is everlasting my legs really high or if that fails a cold tiled floor. It’s bloody hard. Have you had any luck with treatment? Xxxx
I have to admit I’m at a stage at the moment where I’m begging to crumble. I have a 18 month old and my boyfriend and mum do running around for me. My life is getting sadder and lonelier. I feel I have to do something to make this go away but what! It’s so hard . At least we’re all in the same boat and can talk and share stories about what helps etc xx
Kate said:
Hi I am currently being seen by rheumatologist dr Ong at the royal free hospital. At the moment I am going through trial and error stage with medication. I am on lyrica at the mo think it works a little but not enough for me to do thinks like hoovering or too much excertion. At the moment the only thing that really helps is everlasting my legs really high or if that fails a cold tiled floor. It’s bloody hard. Have you had any luck with treatment? Xxxx
I attend My local hospital and the royal free and I visited the royal free today. I have raynauds as well and therefor am trying to strike a balance. GTN patches, lostartan, nifedipine, and hydroxychloroquine have all not worked for me and today I have been prescribed another tablet which I haven’t got the name of yet. They tried to additionally give me Prozac but I refused this and have suggested I have an illprost infusion for five days with all costs paid for by the hospital for my raynauds side of things however I do not yet know whether I will be taking up there offer of these medications. I am also going to be referred as I have been fainting a lot. So to date nothing has worked and being under 20 I have tried quite a few things I think it is mainly just trial and error.
Oh frustrating. I was also at the Royal Free today having the thermography tests. It would be a fun idea if those of us who attend that hospital let the others know then we can meet up for a coffee and chat.
My next appointment is 11th March late afternoon.
In pain said:
I attend My local hospital and the royal free and I visited the royal free today. I have raynauds as well and therefor am trying to strike a balance. GTN patches, lostartan, nifedipine, and hydroxychloroquine have all not worked for me and today I have been prescribed another tablet which I haven't got the name of yet. They tried to additionally give me Prozac but I refused this and have suggested I have an illprost infusion for five days with all costs paid for by the hospital for my raynauds side of things however I do not yet know whether I will be taking up there offer of these medications. I am also going to be referred as I have been fainting a lot. So to date nothing has worked and being under 20 I have tried quite a few things I think it is mainly just trial and error.