Erythromalalgia? Doctors contacted for face to face a... - NRAS

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Erythromalalgia? Doctors contacted for face to face appointment!!!😉

Flor1rence profile image
Flor1rence

I have been suffering with my hands in particularly and also my feet for the past two weeks.

Yesterday I contacted the doctors at 8.30am to be told no F2F appointments due to covid the duty doctor has to contact you. It is very difficult for me to take a call at work cause I am customer facing, anyhow after not getting anywhere and being told i should be available; in other words at home! I agreed to be placed on the list for a call back. I received a call back at 10.20 am and had to say to my customer so sorry I have to take this call from my doctor😕she was very understanding. I was asked to send pics of my hands one or two via a link which I did on mobile. I got the thank you for response blah blah and once pics viewed he would contact.

Pictures were viewed and he said is it tender, itchy, basically he couldn't tell. I sent reply saying tender, itchy, burning and swollen including swollen ankles and 6 more pictures also suggesting it looks like it may be Erthromelalgia. Bear in mind im at work texting all this info etc.

He then responded saying he agrees completely it does look like Erthromelagia and he would seek advice from senior pharmacist and see what rules are about lidocaine creams as he thinks there may be some restrictions on prescribing it on NHS in recent years. He would get back to me today when pharmacy reply, this was 13.20 and 10 mins later he asked how long have I had the symptoms. I replied about two weeks. Thank you for response blah blah blah. At 2.30pm I chased to see if he had a response, reception wouldn't put me through they said nothing on notes and he could call me out of hours. Went home, nothing. So by 8.50pm I thought call it a day!

Went to work today, contacted doctors after work at 2.40pm to be told he has a day off today. I asked if anyone has his surgery today and receptionist said its probably best if he calls you tomorrow, I thought i can't go all over info again so I said yes please could you get him to contact me. I really hope I get that call tomorrow and hopefully he can prescribe a suitable cream, fingers crossed for good news.

On the upside I received my MTX injections today just before midday on an emergency delivery. Hooray for injections, this was getting stressful.

Sorry for the essay, its been an eventful 2 days again! Is this the future of the doctors surgery, I'm not impressed😩

41 Replies

You've had a really below par service from your health providers recently (and that's me being polite) makes you want to have a rant doesn't it.

You must have felt crap saying all this infront of a customer, can you imagine if it was something really intimate 🤪

Funny story (well not for my dad) he once thought the cleaner at the hospital was a nurse and told her all about the problems with his privates ha ha. Traumatised her I think 😅

But moving on i can't believe you've only just got your methotrexate, thats been ages. Hope your joints aren't too bad.

Hope he does ring you back tomorrow, otherwise back to keeping on. You deserve something nice after all this x

awwwww bless your Dad. I did say to the customer I got nothing to hide, I have so much inflammation in my body and I initially called nearly two hours ago😂so i need to take the call, not all people would have been so understanding. Hope doctor calls tom, I need something I've got a fan on all night, not cause im hot to keep the temperature down for my hands mainly, they burn terriblyand bright pink😕xx

I really hope they ring too, hope its not too bad tonight x

thank you xx

I really do hope the doctor calls tomorrow. So bad that you have just been left to struggle on. If the doctor knew he was going to be off he could have asked the pharmacist or a colleague to ring you or see you rather than no contact and a delay to treatment.

Thank goodness your MTX injections finally arrived too. It is awful for you to be left with nothing.

Keeping my fingers crossed that you get some much needed answers and treatment from the GP tomorrow. xx

I hope so, he's such a lovely doctor under so much pressure I guess but I think he could have said he was off today but hope tom i get good news xx

It really makes me so sad to hear that you have been left suffering with no answer or relief. I really hope someone makes contact with you tomorrow and you are prescribed something to help your hands. Take care xx

Flor1rence profile image
Flor1rence in reply to Pippy25

thanks Pippy, as most people on here have problems walking, well at the moment I sympathize because I'm struggling cause im so swollen up with inflammation and nothing to help it! it may be I have to see the dermatologist, I'm due a consultation in 3 weeks but that's too long to wait! but I pray the doctors can help, keep everything crossed for me😂x

Pippy25 profile image
Pippy25 in reply to Flor1rence

I will keep my fingers crossed for you. 🤞

Flor1rence profile image
Flor1rence in reply to Pippy25

nothing so far today Pippy, day 3!!!

Pippy25 profile image
Pippy25 in reply to Flor1rence

Oh Flor1rence I am so sorry, this is really not on is it. It all appears chaotic and wished they would DO something as you are suffering and the stress wont be helping. Take care xx

How awful !!! What times are we living in . I hope you get better luck today. I’ve got to call my doctors today think I have an eye infection . Well I can’t photograph that can I ? 😂

Flor1rence profile image
Flor1rence in reply to rabbits65

thank you I really hope so😉

Flor1rence profile image
Flor1rence in reply to rabbits65

how did you get on calling doctors about your eye?😉

rabbits65 profile image
rabbits65 in reply to Flor1rence

Hi , they sent me to spec savers minor eye care unit this morning. So I managed to get an appointment and they done a few tests and said it’s Blepharitis , apparently a dry eye condition. Thank you for asking. I’ve got eye drops . . How are you getting on?

Flor1rence profile image
Flor1rence in reply to rabbits65

still waiting for doctor to call, day 3!!

rabbits65 profile image
rabbits65 in reply to Flor1rence

Disgusting and unbelievable !!!!

Flor1rence profile image
Flor1rence in reply to rabbits65

terrible just waiting I've chased it at 2.30 😤

rabbits65 profile image
rabbits65 in reply to Flor1rence

What else can you do , change doctors. Perhaps 🤔

Flor1rence profile image
Flor1rence in reply to rabbits65

if I haven't heard in an hour im calling again, the surgery closes at 6pm😣

Come to check if you had heard anything and am so angry that you haven’t. 😡. x

I contacted again before surgery closure and reception said she can't guarantee he would call, I said I need to know please or if not it will go into day 4 and I will be turning up at the doctors tom demanding to see some one! Anyhow she messaged him and he got her to call me back saying sorry but he is so busy, which I feel for him I really do and to buy lidocaine over the counter and see if that calms things down a bit, I try before work tomorrow to purchase some of this cream. How are you feeling today in yourself? xx

rabbits65 profile image
rabbits65 in reply to Flor1rence

How are you this morning. Did you get any joy last night ?

Flor1rence profile image
Flor1rence in reply to rabbits65

hi, I called at 5.30 pm yesterday and put pressure of them and reception called me back and said purchase lidocaine over the counter. I'm calmer today😂thank you, how are you?

rabbits65 profile image
rabbits65 in reply to Flor1rence

Hi , glad you got some response. I’m not very good at present. Nasty back pain and bad tinnitus . But just got to try and get on . Thanks for asking nice of you.

I hope you manage to get a call back today this whole situation with GP appointments is getting beyond a joke now, I do understand they are doing an amazing job and like everyone else need to be safe but why can't we have a Covid test prior to visiting the surgery when we actually do need to be seen F2F.

Flor1rence profile image
Flor1rence in reply to Gladders

absolutely, this is taking too long to sort out and in the meantime making me stressed😉

I don’t want to sound unsympathetic because I’ve had Erythromelalgia in my feet, hands and face for many years now, secondary to my small fibre neuropathy of overlap CTD - Sjögren’s and systemic sclerosis plus RA.

But honestly you’re so lucky to at least have a GP who has heard of Erythromelalgia/ EM- let alone find one who is researching pain relief for it to help you!

When I was first diagnosed with RA ten years ago my EM, Raynauds and small fibre neuropathy all started at same time. No one acknowledged the EM or Raynaud’s for 5 years although I showed photos to my then rheumatologist. He referred me to a neurologist who thought I had MS and did lumbar puncture and brain MRI and EMGs. He said these all showed a systemic rather than a neurological process was occurring. Well no 💩 Sherlock?! I asked about Erythromelalgia but he looked at me like I was mad and said “this is just your RA - not a conversion disorder?”. I scratched my exhausted head and gave up!

My then GP looked it up in his old handbook, Mitchell’s disease (he was a US neurologist who promoted the whole women and hysteria thing), as he recalled it. He tried me on Aspirin - one of the main treatments - but this just caused me heavy nose bleeds so then I got Nifedpine to take with injectable MTX - which made everything swell and caused severe bacterial folliculitis so I had to come off it after 6 months.

Finally I moved and explained to my new GP that I had Erythromelalgia. First she stared at me like I’d arrived from outer space and then she smiled and said “oh you mean Raynaud’s?!”when she saw my rheumatologist’s prescription for Sildenafil/ Viagra. Er.. no I mean I have Erythromelalgia I replied. Strange look returned.

After a few years of changing diagnosis and various anti convulsants and anti depressants used for nerve pain- I decided to give up and use a cream my dermatologist prescribed called dermacool - it contains menthol. I asked my new rheumatologist to list Erythromelalgia / EM as well as Raynaud’s and small fibre neuropathy for accuracy’s sake so that I didn’t feel like a Martian telling other health professionals I have this. She agreed.

Then I saw a neurology registrar last year who saw EM on my letters and saw that I was getting Iloprost infusions which seem to help both the Raynaud’s and EM. However my hands were still swollen and burning so he felt that lidocaine infusions would help as well so wrote to the pain clinic to request these. Unfortunately my postcode meant I went to the bad pain clinic in different healthboard who don’t believe in lidocaine as infusions, patches or cream. So a rude reply came back to him from consultant anaesthetist saying that they don’t treat Fibromyalgia with Lidocaine. I don’t have FM but then found an earlier letter from the GP saying “this lady has chronic pain of Fibromyalgia (which she struggles to pronounce) so we request that you refer her for pain management”.

The neurologist phoned me mortified and said he was so sorry he’d written Erythromelalgia on all his requests but somehow my GPs and the pain consultant had decided he had spelt it wrong and I’d pronounced it wrong - and apart from reassuring me he knew that Erythromelalgia is not same at all as Fibro and had never put that on my notes - the GPs and pain consultant had taken EM off as a misspelling and replaced with Fibromyalgia???!!!

My rheumatologist and dermatologist were both most annoyed and changed FM back to EM on my medical records.

Erythromelalgia is classed as a rare condition and, along with Raynaud’s and Gastroparesis, mine rules my days so I know how horrible it is. I too get phone calls back at wrong times from GPs although I can’t work now due to my conditions.

So I get no pain medications at all for mine and have to use a dictaphone to type now as until my next 3 monthly Iloprost infusions - I get scalding burn blisters on my fingertips and toes from mine. Dermacool cream helps a bit and is one you can get on prescription and apparently lidocaine infusions do help many with it.

I wonder if your GP is struggling to get licenced treatments for it just as my neurologist did? - this might explain the delay in them phoning you perhaps?

This is a good charity and a good HU to ask about treatments for Erythromelalgia on I’ve found:

sruk.co.uk/scleroderma/eryt...

Flor1rence profile image
Flor1rence in reply to 282523

thank you. I suggested that it may be erythromalagia and after sending many photos my doctor said he completely agrees. I've been waiting on response because he is not sure that they prescribe lidocaine but apparently I can get it over the counter. I already have a rare dermatitis on my hands and feet so I take MTX and have OA. I had myocarditis in my twenties so alot of inflammation in my body. I've since had a response after chasing again and the receptionist said sorry but he is so busy and to buy it over the counter and see if it settles down, if not I could have some tablets but they would affect my heart; I didn't say but prob best to not go down this route as my heart isn't particularly 100% Everyone is under so much pressure at the moment i.e. doctors, I feel so sorry for him but day 3 is unacceptable when he promised me a call back Tuesday pm. I work full time and have to do loads for my mum at the weekend, shopping, cleaning, gardening. I have not long returned to work after an operation so hoping this condition may calm down soon. Can I buy dermacool over the counter? 😊

282523 profile image
282523 in reply to Flor1rence

I only meant lucky that he even looked up and acknowledged Erythromelalgia. I too have extremely high inflammation and my EM is definitely triggered by this. I had exactly same experience last week - only worse as GPs actually won’t even see or examine or discuss my pain as they say my conditions are too rare and specialist and tell me to try paracetamol?!

I wanted an IM steroid injection to tide me over while my raise in dose of Mycophenolate kicks in. I should have asked my rheum when I saw her 2 weeks ago but having severe gut issues she’s discovered to be gastroparesis and scleroderma puts me at high risk of pulmonary arterial hypertension so she needed to chivvy cardiology and respiratory referrals as been waiting 19 months! So the RA and EM pain took a back seat at bottom of my list and then I ran out of time.

So I phoned to ask but she was away on leave. Emailed dermatologist to ask but no reply. Then tried GP a week ago and they said they’d phone on Friday or Monday but never did. Meanwhile I got another face to face with my rheumatologist a week on Monday - first time I’ve ever had 3 week interval! I know steroid won’t help my EM but it gets my soaring inflammation and general pain down at least.

If you read that SRUK page it does set out gold standard treatments for erythromelalgia. Yes you can buy Dermacool over the counter but it’s quite dear. GP should be happy to prescribe it though if it helps. Otherwise phone your dermatologist’s Secretary or your rheumatologist’s as Erythromelagia can be treated by both these specialists.

Flor1rence profile image
Flor1rence in reply to 282523

oh thanks ever so much, I will look at that web page. I am due to see my demo nurse in 3 weeks so I mention it to her about EM. If its rare its got my name on it😂thanks for helping😊

282523 profile image
282523 in reply to Flor1rence

Lol I often skip mention of my RA as it’s just a bit common for my list!😉. This is me 🥵🥶🥵🥶🤢🦓xx

Flor1rence profile image
Flor1rence in reply to 282523

I love no 💩Sherlock, my friend uses it at work occasionally😂

282523 profile image
282523 in reply to Flor1rence

😂I need to find the Sherlock emoji but fingers too sore from the no💩🧐😂

Flor1rence profile image
Flor1rence in reply to 282523

would this do? no 💩🔍😂

282523 profile image
282523 in reply to Flor1rence

Yes perfect thanks! Now just got to train my Siri microphone to find magnifier emoji under Sherlock and I’m winning! 😅😂

Flor1rence profile image
Flor1rence in reply to 282523

😂

What a pickle for you, keep chasing until you get things sorted out. Whilst I understand that your GP is busy, if he says he will contact you then that's what he does, or the receptionist phones on his behalf with an explanation. No excuses.

(I've spent many an evening sitting up until the wee small hours marking students work to return it to them on time. I understand the pressures )

Flor1rence profile image
Flor1rence in reply to Mmrr

Mmrr, hi, I put pressure on surgery yesterday and reception called me just before closure at 6pm to say buy lidocaine over the counter, I didn't like her attitude because she said at least its cheaper than paying a prescription, I added not for me I am prepaid each month. Anyway glad that's been sorted, only took 3 whole days to get a response😂

Take careX

thank you Lovetodanceto, good name btw. x

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