Just got a call from GP 😁😂🤣. Some time ago I had to talk with them about the Erythromelalgia getting worse and they wrote to my dermatologist consultant for advice, seems they finally got a reply 🤔🤔🤔🙈🙉🙊. GP needs to get hold of Rheumatology department 🤣😂🤣😂🤣😂🤣😂. But in the meantime to do blood tests including the ANA and complements and the other tests. Well at least the Combined Clinic will be able to see the results if they are back in time. We talked about the best way to deal with the Erythromelalgia and decided to use the topical creams a go so as not to squiff the blood tests results and let the consultants work it out between themselves and hopefully don't prescribe medication that react with eachother. So that in the meantime to I'm itching from head to toe even where there is no rash, my hands and feet hurt plus are almost constantly looking + feeling as if they have been in very hot 🔥 water. Oh and the rash on my back has now got another rash on top of one that came up months ago.😵😵😵😵😟
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Boudica1
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Hi Boudica. So sorry that you’re not feeling too hot especially with all the rashes.
I don’t have erythromelagia but I know some that do and they have found a good amount of relief from low dose naltrexone. I feel like topicals don’t work too well for it from what I’ve heard. I can’t imagine LDN would have that great an effect on your labs either.
Do you have any strong steroid cream for the rashes on your back?
Hope you find some relief soon. Your current situation sounds mighty uncomfortable. Sending hugs. ❤️xx
Hi Jmiller623, I've gone for the cream options for a starting point I was prescribed a drug in the past for pain for something else can't remember the name of it just now and then the GP today spotted that I'd been taken off it because of side effects.No I don't have any steroid creams at the moment and haven't had for a long time as as fast as it was working on one lot it sprang up in another place so it looked like a crazy game of cat and mouse.
So far the only time my back has been cleared of the rashes was once on a high dose of Hydroxychloroquine and the 3 short sharp doses of pregniselone for something else and then not only did the rash go but almost everything else for around a week or so after and then back it all came.
Still it's not that long now for the next appointment which is apparently a combined clinic but I not sure if it's with consultants from different departments or a lot of dermatologists all scratching their heads, chin's and bum's 🙊🙉🙈😉🤣😂😂😂😂🤔🤔🤔.
At least the GP is getting hold of Rheumatology department but was taken aback when I told her that the number one rheumatologist who specialises in Lupus and Sjogren's is not there anymore and has moved to a centre of excellence, sadly we don't have that at our main hospital. GP was going to get a hold of him and didn't know about his move so now it's back to pot luck. 😵.
Lucky for me when she said about the blood tests I looked online 😟 the first available appointment is in two weeks so I booked straight away rather than later when I get the blood test request form. You used to be able to get one of the next day and as the level of Covid19 has been dropping off big time I find it a bit much that it's taking so long.
EM is the pits🥵🔥🔥🔥🥵. Mine was diagnosed by various specialists but I had to ask my dermatologist to actually specify Erythromelalgia on letters.
Re topicals: I have found Dermacool cream the best for EM pain and itch. Great that a GP knows that Erythromelalgia exists! I just used to get funny stares (now phone pauses) from mine if I mentioned it. One actually corrected me and said “I think you are trying to say Fibromyalgia?”. Er no I am not!
Burning fingers excruciatingly crossed that you get to a good rheumy soon. X
Hi 282523, yes it is the pit's. Strange both rheumy and dermatologists have see it especially on the hands as that is there 24/7, one rheumy did say it was something of interest but not one consultant told me what it was let alone how to treat it. The GP who finally told me the diagnosis is a trainee GP and she wrote to my consultant dermie who months later contacted her and told her she should contact rheumy.OH NO not that blasted hospital roundabout again, talk about passing the buck and being shunted from one department to another.
I've been given a cream that's made from extracts of peppers so waiting to see how it goes while I wait, fingers cross that one day my hands will look normal pink again instead of red as for the feet please just some relief at night it's not too much to ask is it.
Totally relate. Typing is torture now I have to dictate - which means my OH is always raising eyebrows about stuff I’m writing and comments “so this is why you never listen to a word I say?!”
Do you have small fibre neuropathy and RA-like pain? I think I’m right in saying that EM is most associated with Sjögren’s and RA. I was initially diagnosed with RA ten years ago, then this changed 4 years on to Sjögren’s by lip biopsy. Now it’s overlap with scleroderma but I’m told the SFN/ EM makes it predominantly Sjogrens. Doesn’t matter really as it’s all immunologically driven but neurologists are often the ones to diagnose EM - which is thought to be a cutaneous manifestation of SFN/ PN. Neurologists possibly see it more and are more interested in it due to MS being one of the underlying causes.
It’s taken me ten years to fathom all this out and get my care to join up a bit more but I’m still often bounced🙄🥰
I did have a positive RF result but not high enough for rheumatologist at that time everything else they tested for they ignored as a false positive like the ANA as he was looking for one of the Vasculitis diseases at the time due to my having recently been diagnosed with Urticarial Vasculitis. Another rheumy thought it was Sjogrens but again my bloods are up, down or border line and the lip biopsy inconclusive so because of all the symptoms I ended up with the diagnosis of seronegative Sjogrens. Ah the best bit of all this is I had to have yet another skin biopsy so no not Urticarial Vasculitis but probable Jessner's Lymphocytic Infiltration but I had already been told that by the head Dermatologist at the hospital after he took a very quick look. The usual consultant dermy I see is getting more unsure because it doesn't behave like it and some of the other skin oddities. All I do know is that the biopsy is not always a hundred percent because there are several other conditions that look either very similar or identical so it's back in front of the big man again this time with some others as well. to me at the moment it all seems like a total waste of time because they do their normal trick of ask questions but don't actually listen.Yes the aches and pains in the hands and feet can be bad and seems to be getting worse and worse, is the Erythromelagia, RA or seronegative Sjogrens who knows. I wonder what this next batch of bloods show again.
Sorry the reply dragged on but I'm finishing this reply as yes you guessed it hands and feet with the added bonus of a headache and face ache due to the sinus problems.
30-50% are seronegative with Sjögren’s but 75% have ANA or RF or both. Not in a great place myself diagnostically although seropositive for scleroderma and lip biopsy 100% positive 5 years ago so guess I’m in better place diagnostically than you. My antibody is so rare that other doctors run a mile apart from my rheumy and derm - but it does at least ensure I’m treated and taken seriously even if I’m not getting a label apart from overlap CTD predominantly Sjögren’s. I think it takes consultants with a lot of confidence and experience to step outside of the box and diagnose seronegative if we don’t fit any of enough diagnostic criteria x
Hi Boudica 🤗I can relate as u sound a lot like I was prior to getting the right treatment..the rashes on top of rashes especially n just as one starts to fade another area flares up!! Blooming skin is everywhere n the only place on my body that was spared was my face!!
Rashes on my back were particularly difficult coz I couldn't see or apply the steroid ointment myself..hubby was chief applicator n inspector of my back..oh and photographer!! 😹 I have quite a few moles on my back too so I had to be extra careful not to scratch!!
I found that wearing cotton gloves helped me at night..if I was scratching in my sleep it prevented me from causing too much damage.
I have everything crossed for u for your combined clinic..hopefully with your biopsy n blood results they can at least start u on a treatment plan to try n get it under some kind of control. As u r probably aware it does take time to get on the right treatment.
Everything has slowed down I agree..we usually have long waiting times for appts but since covid getting appts n blood tests is incredibly frustrating..GPS r overworked n the NHS is really struggling. I have just had dermatology cancel n rebook my telephone appt to December!! I'm supposed to be increasing methotrexate in order to continue reducing steroids..this is important to me but apparently not so important to them!! 😤😹🌈😽😽Xx
Hi, yes it's very frustrating at time's and must be even more so when you are mid treatment or changing treatment and things get chopped and pushed back. Shame some of there doctor's don't know what these symptoms feel like especially over a long period of time. I would love to strap something on their body that causes some sort of itch and leave it there for weeks and see how they last befor they scream enough get rid of it.X
Maybe we as patients should insist that as part of their training they have to go through some sort of process so that they can fully know what we are going through?Somehow I don't think they would even give it a try for a day. Hahahahahahaha.
😹😹I'd like to hear them describe their experiences too..so that I could look at them strangely when they describe nerve pain as a 'lit sparkler' or fizzy lemonade in your bloodstream!! 😹This is how I've described symptoms to docs!! 😹🌈😽😽Xx
😂😂😂🤣😂🤣😂. Love 💕😍 it. Plus some of the other words we can use for pain and itching in describing how they feel or how we are feeling when fatigued other than very tired or exhausted.I'll give them a starter of 10 for explaining how the pain feels and they are not able to use the word pain.
That is awful krazykat as like you im increasing mtx in order to reduce steroids. To have to wait till dec for an appt really is unacceptable. I hope you've got yourself on the cancellation list!. Keep fighting. Xx🌈❤🌈❤🤞🌈❤🤞
Aw thanks Misty 🤗 I'm just sitting n waiting patiently coz if I had my way I wouldn't be talking to any doctors..but it is what it is I suppose!! Gotta just keep on keeping on..GPS r stressed to the max n there's a huge backlog so I'm just gonna get through this year as best I can. How r u now after your toe op? It's good to hear from u 🌈😽😽xx
Hi Boudica, I have erythromelalgia too and it really is hell so I totally empathise with your situation.
I get it on my hands, feet, knees, nose, ears and cheeks and sometimes the tops of my arms.
I've been diagnosed with cutaneous lupus as well as Sjogrens and Raynaud's.
All the symptoms came around the same time.
So for me I can't get too hot because of the EM or too cold because of the Raynaud's.
I am seeing a neurologist who is treating the EM. I found duloxetine has been one of the only drugs that has helped and no interactions with hydroxychloroquine which I also take for the rashes.
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