I use to go too clinic in ninewells under vascular clinic Dr Bains, he is ill now clinic is closed down !! Why do not know, no replacement.
I have been left now to deal with conditions on my own.
I have Raynaurds and erythromialgia rare condition.
I was on ilopross infusions for 2yrs and it made my condition worse.
I was told by Dr Bains he could only next offer back spine operation with risk of complications of affecting organs close to the area making them numb and no longer work.
I am trying asprin for now I looked on NHS choices.
Saw aspirin was an option to try.
I shall ask to see a head GP at my local practice, we only have one here.
I live in Kirrinuir moved here less than year ago from Montrose who never gave me support either.
I have had this condition probably all my life but the heat side was put down to menopausal.
I am now 70yrs.
No treatment works I have high sensitivity towards medications even antihistimines.
I have now gained a phobia about trying them.
I feel my condition is getting worse.
From pure white freezing cold to burning stabbing pains
I have been just making do.
I have to go too ninewells to have a blood pressure monitor fitted as my bp is low all the time.
Medication effects it too.
I shall try to push head GP for further support.
I do not know I may be going onto further progressive conditions.
I shall let you know if anything changes in way of support.
Thanks for your help.
I use to go too clinic in ninewells under vascular clinic Dr Bains, he is ill now clinic is closed down !! Why do not know, no replacement.
Your post really struck a cord with me. I too suffer from EM and Raynaud’s overlap. I am 52 years old. My current NHS rheumatology consultant insists the menopause is central to my living hell with pain from both on fire hands,face,feet and near frostbite toes and fingers. I have been prescribed numerous tablets, none of which has helped. Prior to the this male consultant I was treated by a female doctor who appeared to understand the conditions and was very sympathetic. Unfortunately she now only does private work at £250 fee. Which I cannot afford. I am just plodding along with daily, hourly misery and pain with numb, discloured limbs and no respite. I wish you hope like most misunderstood sufferers.
Hi, yes I have been in your shoes , excuse expression.
I collect as much evidence by taking photographs and keeping a diary of my food.
I researched what foods can trigger.
I do not know your full history.
I can only speak from my own experience.
I know during winter if I allow my body to stay inside a cold enviroment with no heat I know I shall suffer move come evening.
During this fuel cost of living rises, I keep one room in the house to a temperature which stays steady all day.
Rest of house I switch on only 20mins upstairs hour before going to bed.
My body goes hot every evening so.do not need heat but keep damp away by putting it on for short bit.
I find if I allowed myself to get to.cold my body
Burned up.badly every evening.
I am hoping this shall help.it appears to.be at moment.
When I go outdoors I make sure I do not leave the house feeling cold.
I keep warm as I can.
This way when I come back from walking the dog, my feet still burn but cool.down within few mins when I remove my shoes.
I.feel.the knack is to not allow our body to.over heat or go to.cold.
I work at this by using above.
I do however feel I need tests as I am getting muscle spasms and joint pains in my feet big toes and thumbs on hands.
I asked to speak to head doctor on Friday.
Maybe you need to push to be tested by head consultant at hospital.
Take plenty photographs.
Drink plenty water when your hot and plenty.hot drinks when you are cold.
It is a nusiance to keep on top.of it.
I.get respite when I do these things.
I find it at its worse when I am not in my own enviroment or try to.exercise.
I have all I need here cooling fans, heat controlled, outwith house, holidays or social.events are very difficult.
Trying to do these things without drawing attention to the problem is not so easy.
I also move around slowly not to rush to over heat.
Housework is a nightmare at times.
I was laughed at by the very first doctor I went too see.
That was way back.
I often got asked by many ppl why are you always hot.
My mum she always sat close to a fireside.
She died I was 12yrs so no way of knowing if she had it.
If you are not menopausal now I do hope you do.not take the medication.
It was around your age that I got full.hospital tests.
On machines for raynaurds.
I can cope feeling cold now that I figured out to stop.myself getting cold in first place.
The heat is my worse nightmare in evenings and both during night.
I make my bed a certain way so I can adjust my body to suit if I need heat or cold.
I am happy you shared a little of your history.
If I can be a support I am always here.
Hello, I’m sorry to hear the impact erythromelalgia and Raynaud’s are having on you and how difficult you’re finding getting support. My story is very similar although I’m 40 and erythromelalgia & Raynaud’s seem to be two symptoms that are part of a wider picture of progressing ill health for me. I’ve found it helpful to understand what’s going on and thinking of my blood vessels being extremely over reactive- seizing up when cold and restricting blood flow with Raynaud’s and overheating too much and letting blood flood more than it should with erythromelalgia. It seems the trick is to try to keep that pendulum swing from being too extreme.
I live in Glasgow and another Scottish woman emailed me via the erythromelalgia association website last year. I can’t help wondering if there might be a place for a Scottish support group/awareness raising campaign if there isn’t one already. I’m no longer able to work and am house bound so having to prioritise applying for disability benefits and working with an Occupational Therapist to help with my activities of daily living at the moment but I may look into it in future. It seems a shame that we’re all fighting individual battles when we could be sharing knowledge and support.
Hi yes you hit it on the head this is exactly how we have to live with trying to control our symptoms.
In scotland in your area Glasgow if you search rare condition support glasgow they may can help you.
I live over north east scotland when I contacted them they said they only deal with glasgow.
I know on facebook there is a scotland erythromialgia group, when they connected with me they were very quick to divert away from offerering any support.
I left it did not address individuals.
One sided was my.opinon you may find it different.
I feel Scotland no doctors treat rare conditions except one I mentioned to you in Glasgow.
I.not sure what they offer but appears to ne well established.
Let me know if you find it on google search.
I believe I deleted their website.
If I find it I shall send link.
They cover rare conditons for adults and children.
You maybe in luck.
I thank you for getting in touch and here anytime you need a chat.
I found their email
This is what they replied to me
On Mon, 9 Jan 2023, 3:24 pm , firstname.lastname@example.org wrote:
Thanks for getting in touch with the Office for Rare Conditions in Glasgow. I’m sorry to read of your situation, especially the clinic you attended in Dundee closing. The Office is a local project working with patients and families in Glasgow, or those who attend a hospital in Glasgow. We are funded through Glasgow Children’s Hospital Charity and our work is mostly signposting, raising awareness of rare conditions and providing general support through our patient group. We are unable to offer clinical support, I’m sorry.
You are most probably aware of the Facebook support groups but I thought I would send links just in case you haven’t joined them yet. You may find others who feel similarly to yourself through these groups and find a way to change your or fellow sufferers situations. Many voices are more powerful than one.
(3) UK Erythromelalgia sufferers | Facebook
(3) Raynauds & Erythromelalgia Support UK | Facebook
I also found this American site About | The Erythromelalgia Association and a patient handbook which can be downloaded TEA-PatientGuideBook-1.pdf (erythromelalgia.org).
As I say, you may well be aware of these sources of support. If you would like to talk with others with rare conditions there is a Scottish Government Cross Party Working Group on Rare and Undiagnosed Conditions. Chaired by Natalie Frankish from Genetic Alliance UK, the group meets every few months to discuss issues common to those with rare and undiagnosed conditions. You will find more info here: Rare Genetic and Undiagnosed Conditions | Scottish Parliament Website .
The meetings are open to the public, you would just need to register prior to it taking place. I think there is a meeting coming up soon. If you would like to attend you should e-mail email@example.com
I hope this information is of some use to you.
Project Manager, Office for Rare Conditions, Glasgow
Department of Child Health
Office Block, Ground Floor Zone 0.01
Royal Hospital for Children & Queen Elizabeth University Hospital
1345 Govan Road
Tel: 0141 451 5899
General Office e-mail:
The University of Glasgow, charity number SC004401
Sent: 07 January 2023 22:52
To: info <firstname.lastname@example.org>
Subject: [Office for Rare Conditions Glasgow] Contact us
I am an adult with rare condition is this site useful to me?
I shall share my story at least to make more awareness.
First I live in Angus not Glasgow.
If you know of anything in my area I be very grateful to know.
Reason being the clinic I attended closed in Dundee hospital.
Before it did all resources medication wise had been used none of which worked for me.
You may google my condition.
I do have Raynaurds too which you shall be aware exists.
Not many have heard of Erthromyagia.
A long word meaning burning hands and feet extremely .
I have had this condition probably all my life.
Once I reached premenopausal age it was treated as that.
It was not until I reached my early 50s past menopause that again no matter what I was offered to help the condition nothing worked.
I attended vascular clinic and had infusion for 3days 7hrs…every 3mths tried this for 2yrs still nothing worked.
Then onto medication which appeared to help a little at the time soon my body became use to the medication that nothing worked.
I was told only few days ago nothing more can be offered nor any support given due to clinic closed.
This left me feeling devasted.
You can only imagine the extreme cold from raynaurds to extreme burning from erthromiagia
I have no medical help at all to assist with the extreme triggers from our global warming conditions which do not help.
Also the costs to keep warm or cool using heating or cooling aids.
I believe others like myself ought to have extra allowances to help pay for our medical aids to manage our rare conditions.
I do not know of any.
I suffer in silence.
If you do know of anything do let me know.
Time: January 7, 2023 at 10:52 pm
IP Address: 126.96.36.199
Contact Form URL: Contact us – Office for Rare Conditions Glasgow
Sent by an unverified visitor to your site.
Thanks for sharing that info. I had come across the centre for rare diseases in my online search for anywhere that might help but thought it looked like it was more geared towards children and that it didn’t offer medical or practical support. The reply to you confirms that so I’ll hold off getting in touch with them until I’ve got a few more of the higher priorities under my belt.
I understand your frustration, people mean well and offer vague support but what we could really do with is a specialist doctor who really knows their stuff about our condition.
Have you ever seen a neurologist or tried something like Gabapentin? Erythromelalgia can be considered a peripheral neuropathy even though it also involves the vascular system. If the vascular clinic you used to go to has shut down you could possibly ask to be seen by neurology instead. The other thing to maybe think about is a referral to the pain service if you haven’t tried that before? They won’t know about the specifics of erythromelalgia and Raynaud’s and treatment but they may be able to help to give you strategies to lessen some of the secondary issues like stress/frustration that come with pain & make it worse. I’m sending well wishes in your direction!
Hello, hope your day is going good today , thank you for your reply.
I have just been with top GP at practice.
Getting bloods taken.
My vascular clinic have ditched me with no more to offer.
Trying now to investigate for underlying conditions due to other symptoms.
Stress has been major.part in my.life since losing my son in 2000
My husband also.is unwell.daily.for 15yrs.
GP is aware.
I am a professional tai chi , chi chong so know about stress reducing.
Unfortunately.my.daily stress is due to living daily with unreversable circumstances.
I said to doctor if my bloods come back clear then I wont leave it there.
He said fair enough.
I need to know it isnt an other condition.
It is very hard to describe this condition.to others as it changes so fast.
Finding something which keeps it balanced is what we all require.
Yes would be great to have a doctor specialize in it.
I may set up.a change sign petitionon fb to get more attention to this illness, find more to support our needs.
Find out if anyone else in area lives with it too.
Keep in touch.if you find out anyone else in your area.
I wonder if you have ever had genetic testing to determine if your erythromelalgia is primary or secondary? The voltage-gated sodium-channel known as Nav1.7v and encoded by the gene SCN9A which is a mutation. I think they have discovered other mutations SCN10 and 11.
If your erythromelalgia is primary your erythromelalgia will be because of this mutation. If you have primary erythromelalgia there are other treatment options not available to people whose erythromelalgia is secondary. such as mexilitine, and others. I believe you are more likely to have success with anticyclic anti depressants eg. amitriptylene.
If it is secondary it is more likely to be secondary to/caused by other inflammatory activity, and the emphasis here is to deal with the original inflammatory process. e.g. my EM is caused by vasculitis. With treatment for the vasculitis, I have had the benefit of around 10-15% improvement which makes my life more workable.
I do not know of anywhere in Scotland but there is a very good erythromelalgia consutlant specialising in primary EM called Prof David Bennett at the John Radcliffe Hospital in Oxford. He has funding to do genetic testing. At least it brings a bit of scientific rigour into one’s case. It begins to clarify what is going on, why, and possible treatment options. Many of us took years trying to get a diagnosis, going from pillar to post. If you were able to manage to get to Prof Bennett, he would probably be able to advise on where the nearest specialist is to you. He may be able to start treatments then and there, I dont know.
It may be a stretch to come to Oxford but I do think it would be worthwhile.
Hope you get some relief