Living Hell

I'm really at the end of being able to cope with this condition. My face is like this constantly at the moment, burning all over with scalding sensations on the reddest bits. It used to be that this only happened when I sat for about 30 minutes or instantly on lying down, which meant I spent about a year standing/walking for about 20 hours a day (including all through the night, even in deep snow), but now it's started getting really bad in my feet, I can no longer walk for long enough to bring flares down. Since trying lamotrigine, the pain has also started in my hands, I've notice my fingers tips are now going red and developing stabbing pains if I touch anything with any pressure. Now the pain in the face seems to be heading towards constant, with no remission at all in the areas with worst pain. As well as the obvious signs on the face, I also have it in my eyes, inside nose, lips and tongue, sometime ear canals as well, plus difficulties with my throat and larynx which I'm sure are related. Nothing has helped at all.

I seem to have an extra-unusual manifestation of it, as I also have systemic autonomic dysfunction, a rare kind with raised norepinephrine, and all painkillers with an adrenergic element (tricyclics, SNRIs, SSRIs etc) make it much worse, making me think this is more like having CRPS with sympathetic involvement in the pain.

I really cannot carry on much longer like this. I'd hoped lidocaine infusion would provide relief, but having read other people's accounts of increased flaring or deterioration, that's more or less taken away my final psychological safety net.

Oh I am so so sorry you are feeling this amount of pain and thinking there is only one way out. I am no medical expert and therefore can’t help you with that side of the battle but I want you to know that we are here for you to try and support you through this. I urge you to talk to either your doctors or maybe call a suicide helpline.the treatment of em is a difficult road and therefore distressing when things take time. Are you registered at a pain management clinic, they have options that general practitioners don’t. Have you also been able to find a em specialist in your area, if not maybe sending an email to one to ask for advice could be beneficial.
Much love

Hello Elizabeth. I am so sorry. I too have it all over my body including face ,my eyes and tongue. May I ask how long yours has been effecting you severely? I ask because last year I was effected so bad It was all over my body’s 24/7 for about 6-8 months straight. Then it got quite a bit better all on its own not perfect but much better. Then about 5 months later it has morphed into the moderate stage I am in now. I know every EM is different but mine seems to fluctuate in severity lasting months at a time in different stages of severity. I saw the picture of your face and it reminds me so much of myself.i always thought I was the strange one for having it all over my body but now I see it more and more in people. I have a few pictures posted on my page if you want to check them out. It’s crazy. It’s like looking in a mirror to see yours. You seem like such a nice person You shouldn’t have to be going through this. It’s not just the pain which is bad enough but it is physically disfiguring too. Most people that see me assume I have a bad sunburn. Strangely enough I have actually had someone tell me I looked good. I have a little color! ( all while in burning pain!) I do worry about you. I found a few numbers you could call to talk with someone. I find really getting it out helps during the really bad times.i try to keep things in to not bourdon my family but it is helpful to really get it out every once and a while!i would love to call and talk but I am in the US with no international plan. Here are the numbers I have found…,. Samaritans UK & ROI
Contact by: Face to Face - Phone - Letter: - E-mail:
Hotline: +44 (0) 8457 90 90 90 (UK - local rate)
Hotline: +44 (0) 8457 90 91 92 (UK minicom)
Hotline: 1850 60 90 90 (ROI - local rate)
Hotline: 1850 60 90 91 (ROI minicom)
E-mail Helpline: ■■■■■■■■■■■■■■■■■
24 Hour service:
Please let me know how you are holding up. I will send you a friend request so you can message me if you would like. I really want to keep in touch. Take care,Alina

Dr Bennett was brilliant with me, I emailed him personally in September and he got back to me within 10 minutes even tho it was a Sunday night at 9pm, maybe that’s the route to take…?

I did have to email dr Bennett a second time when his secretary hadn’t responded but he did get it sorted then. I have very little trust in kings college because after dr Bennett left they failed to follow up my biopsy, MRI and bloods even tho they satisfied the criteria for ms. I really hope you get somewhere with the dr you’re seeing now then and hopefully get some sort of treatment program, even if it’s trial and error you’ll start to feel like they’re at least trying.

Elizabeth - Really breaks my heart to hear how difficult things are for you. In all of my research I have come across a number of your helpful posts both here and at DiNet (that’s you, right?). It is clear you are very intelligent and well educated on this subject matter and I found a number of your posts to be helpful on autonomic conditions.

I probably can’t tell you anything you don’t already know, but I’ve seen the mention of botox injections to possibly block the nerve pain. Additionally, some folks have had marked success via a sympathectomy for the hands and feet. I understand this can be done on a temporary basis to see how the body responds to it. Some get worse, and some get much better.

I am sure it must be very challenging to keep the faith that things will get better. You can’t be certain they will, but you can’t be certain things won’t improve either! Also, new drugs are on the horizon which could prove helpful. I am from the US, so I don’t know much about the doctors or medical system across the pond. However, I am happy to just chat if you need someone to talk to.

I really think you should go with the London offer, any chance of getting things sorted is worth giving a go..!! I wish you all the luck that they get this sorted asap xx

Congratulations Elizabeth! I know it’s just the first step in a long battle but at least you have been able to start the fight! You are an inspiration for many of us to not give up, not take no , or I don’t know from the doctors. To keep on pushing and eventually they will have to listen and do something to try and help. I am very happy for you. Take care, Alina

Dearest elizabeth,

I have offered to phone you numerous times to offer support. Many of us are in the same 'living hell' or worse , and share your frustration, fear and pain. Talking, sharing with a fellow sufferer 'in real time' may help..... emotionally at least. I found a phone call just sharing symptomology comforting - u feel as if its only you- despite chatting on this site. The road to diagnosis ,let alone treatment, is generally an arduous battle .As if we dont have enough trying to cope with the disease and its fallout. One blessing is that you have at least seen a top specialist Dr Bennett, have a diagnosis and retain your mobility. Again, i dont understand why you have to pay when NHS in UK is free. If treatment is being with held that is unethical and you most certainly have a case with PALS ie: failure in duty of care. PALS act on your behalf within 5 days.You can also seek second opinion on NHS free. I gave you my specialists name. As you know he has argued with FDA and secured me clinical trial.. he is a very compassionate proactive man.... contact him. Again, if you would like to send me your email ill forward you some of his research. Elizabeth this is a wicked wicked disease- we all know how you are suffering and our thoughts and prayers are with you.Please - stay strong, hassle them -email,phone, letter- push forward slowly.... you will get there. I know it doesnt feel like that and you are frightened, totally exhausted and in continuous pain but believe us we have all been there too - you WILL get help dear friend, and things will slowly grow more manageable.

You are in my prayers... in all our prayers

God bless

mads x