Dismissed by Rheumatology department yet again, Erythromelalgia - lupus? hydroxchloroquine

[Skulls570]

After being referred to Rheumatology in August 2023 by Orthopaedic department because of my hand symptoms.

Was seen by Rheumatology in January 2024 where I was misdiagnosed with Fibromyalgia a condition I don’t have as I have never had widespread pain or tender points, told to take amitriptyline and get a good night sleep and was shown the door!!

Was referred to Rheumatology again and was seen by Other Consultant in March 2024.

Clinically suspect arthralgia was the diagnosis at this point as my mother has rheumatoid arthritis and my father has spondylitis therefore a watch and wait to see if my symptoms would develop.

My symptoms did develop-

Joint swelling and pain. Stiffness especially in the morning. Especially in PIP + DIP joints. Swollen fingertips since January 2024 and loss of sensation in them. Joint swelling in hands, toes, knees and elbows.

Hands are deforming especially my right fingers and happening in left hand.

muscle pain and swelling.

bruises on my body especially the legs and have no idea where they have come from.

Skin issues- including thickening, change in colour, skin tightening especially around joints in fingers and toes. erythema patches and changes to my nails.

Blood vessels- development of a rare condition of Erythromelalgia in my feet but especially my right hand but now has started in left hand and both hands are getting worse.

Other symptoms include-

Dry eyes, dry mouth, fatigue, mouth ulcers + dry lips, night sweats, weight loss+ no appetite. Depression, lack of energy + for life, I don’t feel like me anymore it get irritated easily, angry and I’m not a happy person anymore.

Clinical diagnosis at the time I have-

Clinically suspect arthralgia, Positive ANA speckled pattern 1:80, equivocal cn-1a antibodies which the consultant will not re test. As of March 2024 and have never been repeated. persistently low c4 complement with borderline low c3 complement. Neutropenia with 3 time this year. Gilbert’s syndrome.

After seeing a private rheumatologist his advice was that it was EM and Palindromic Rheumatism. His suggestion was to start a trial of hydroxchloroquine. Where my GP agreed with this but as it was a private recommendation he was need the approval of NHS Fife rheumatology department to write the prescription for this. Where my GP wrote to The consultant in nhs fife personally to do this as part of a shared care arrangement but he never replied. 

Private rheumatologist also wrote to the consultant at NHS fife with he’s recommendation and advice but that was dismissed too.

Been under Rheumatology care since March 2024 with referrals to dermatology department where they have completely dismissed me and a MRI on my hands in September 2024 when my hands weren’t flaring.

I have yet again been dismissed by Rheumatology Department and put back to my GP care to manage a rare condition of Erythromelalgia - where no investigation into seeing the cause of this condition where it has been linked to autoimmune condition.

Was supposed to have a 4 month follow up appointment at start of December 2024 where I was hoping to discuss my symptoms getting worse and now affecting me at work but don’t have that opportunity to do this as I was dismissed and discharged without knowing only to find this out when I phone the rheumatology department appointments line to make my appointment that I am no longer a patient in the rheumatology service.

So yet again no one is listening And What I am supposed to do now?

I’m physically and mentally done

[springcross]

Hi Skulls570. This is awful. I think if I was in your position, I would ring the NRAS Helpline on 0800 298 7650 and ask their advice - they are there Monday to Friday, 9.30 to 4.30. Good luck and let us know how you get on.

[Skulls570 in reply to springcross]

Hi springcross,

Thank you for taken the time I really do appreciate it. I will differently do that as I’m at a complete loss

[springcross in reply to Skulls570]

You're welcome, I hope you get it sorted. 🙏 🙂

[skinclinics]

oh my ! My heart goes out to you . It’s time to start a complaints procedure as this cannot be allowed to go on . Best to contact your hospital and ask them for a complaints procedure form and start the ball rolling . It’s very likely that a lot more patients are being treated in this dismissive way . We are treated so differently here in North Wales . It so unfair that medical care and treatment all boils down to a postcode lottery in many instances. Don’t give up

[Skulls570 in reply to skinclinics]

thank you so much for your reply

Spoke to the clinical manager of the department today and going to speak to the consultant making all the decisions that affects my life.

The sad thing is I’m a hcsw working in the nhs outpatients and part of the department is the rheumatology clinic and they are still not interested.

It makes me sad as this is what our nhs has become, the patient is never put first they just dismiss ever symptom you have.

[skinclinics in reply to Skulls570]

Your post saddens me as I was head of a cardiac dept in the NHS and worked within the health service for 35 years . I left in 2005 and all of us who worked during that period saw the NHS at its best …. and sadly the start of its decline . The decline being initiated by ‘changes for the better’ and reduced staffing and funding . It’s not all doom and gloom but it’s significantly different now to as it was then . Good luck with your discussions… I do hope you are immediately reinstated and given the proper medical attention asap

[Skulls570 in reply to skinclinics]

Thank you 😊

[Flipper12345yellow in reply to Skulls570]

I worked for the "caring" nhs and when diagnosed with ra my job was taken from me.I was so ill I could not involve union or fight it and so I let them off and channelled what little strength I had into getting myself a bit better.

After many failed drugs I'm still struggling but nothing like I was when first diagnosed.

Stay positive everyone.

[Skulls570 in reply to Flipper12345yellow]

Thank you 😊

[WilfDog]

Hi Skulls570Im so sorry you have neen dismissed like that. That's disgraceful. You definitely need to complain. Are there other hospitals you could be referred to or ask to see a different doctor, if possible. I know requests are limited these days but you clearly need to be seen.

Somebody suggested ringing NRAS Helpline. I think this is a good place to start. Loads of luck xx

[Skulls570 in reply to WilfDog]

The consultant I seen in 2022 was an urgent appointment in his lupus clinic but at the time was only having stiffness especially in my hands but my blood test shown i had a higher crp, Thrombocytopenia, low c4 complement and borderline low c3. Therefore he said if I experience worsening symptoms get referred back to rheumatology right away which I did and this is what has happened.

Going to push for me to be seen by this consultant.

Going to give the helpline a call 😊 thanks again for your support 😊

[WilfDog in reply to Skulls570]

Good luck. Don't give up! Xx🤗

[Skulls570 in reply to WilfDog]

Thank you 😊 xx

[Memaw21]

sending hugs 🤗

[Skulls570 in reply to Memaw21]

Thank you 😊

[Bossie1]

hi

Similar experience but not as extensive as you whilst awaiting to get diagnosed. Dismissed because no redness or joint deformed. Eventually a wonderful locus referred to another hospital. In examining me the consultant asked what my scans/ x Ray had shown. Never had any 🙄

Scans showed inflammation. I have sero negative psoriatic arthritis. My inflammatory markers are never raised.

Certainly raise a complaint but maybe ask for referral to another hospital if one available.

[Skulls570 in reply to Bossie1]

I will do 😊 thank you for your support

[Otto11]

Hi can you contact PALS at the hospital? They may be able to help with suggestions for the next step. They were great when I used them.

[Skulls570 in reply to Otto11]

In Scotland we have a patient experience team and can make a complaint through them.

I have put my story on the care opinion website but just waiting for it to be approved then usually someone for the hospital gets in touch, maybe they can do something. Fingers crossed 🤞🏻 😊

[Otto11 in reply to Skulls570]

I hope so 🤞for you x

[RosyrosyD]

So sorry to hear this. My husband has also been dismissed by 2 rheumatologists despite having classic seronegative RA symptoms. The latest did a US scan of his hands while saying "I'm not very good at this"! And he said "well I'm not going to give you any of my fancy RA drugs" when my husband said please can I just have a trial of methotrexate or similar (he is already on high-dose celecoxib for the pain). They both blamed his symptoms on the obvious OA in his left knee (injury related) and in his thumbs - yet he has pain, redness and swelling in both hands (proximal joints), both knees, both feet, sometimes elbows and shoulders. I just don't get why these consultants are dismissing people like my husband and yourself? Did they not train to help people? I'll get my husband to ring NRAS as someone suggested (thank you) but we think we'll have to pay for a private consult at another hospital to ensure he gets a fair assessment.

Wishing you lots of luck getting the treatment you need 🤗 x

[Skulls570 in reply to RosyrosyD]

that’s just terrible how your husband been treated!

Think sometimes they treat people like they have to have textbook symptoms and if you don’t tick all the boxes then you can’t have that condition, instead of really listening to how the patient feels and the symptoms they are having. The nhs doesn’t put the patient first anymore it’s all about money and numbers 😥

Thank you for your support 😊

[Sebastian247]

Your situation sounds a nightmare.

I was also misdiagnosed with Fibro by rhuematology (without any examination) and had to get my GP involved to point out I didn't have it. I have to wonder how often this is happening.

I wonder if PALs at the hospital could help?

Wishing you the best. Seb

[Skulls570 in reply to Sebastian247]

Hearing everyone stories think it happens quite a lot but only person who’s suffering is the patient not the doctors making all the wrong decisions.

We have a patient experience team in Scotland, have put my story on the care opinion website but just waiting for it to be approved then usually some for hospital gets in touch.

Thank you for your support 😊

[sunshineday]

So sorry Skulls570, what shocking service. I was a complaints and litigation manager and involved in clinical negligence for 15 years in NHS. Write a formal complaint to the Chief Executive, he/she has ultimate responsibility for care in the Trust and needs to know when things are going wrong. I had to do a board report every month about complaints received, what action had been taken to resolve the issue and what changes to care had taken place as a result. It certainly focuses the mind. I have no idea what happens now but if the complainant was unhappy with the outcome they could ask for an independent review involving a nurse director, medical specialist and a chairman from trusts outside the area or even from a national registry. Please don't continue to struggle and suffer and deteriorated further. Hope your care improves and your health as a result soon. Joy x

[Skulls570 in reply to sunshineday]

Thank you 😊 I will look into that xx

[Amnesiac3637]

Definitely write to the CEO as suggested by sunshineday. I have always done so with any complaint involving a large organisation and the NHS is no different. I have worked in it as a clinician for years and it’s getting to the stage where people have had enough but don’t know how/where to complain.

If you go straight to the top it’s where the buck stops so best of luck and hope you get a resolution to the really bad treatment you’ve had to put up with. Not acceptable at any level.

[Skulls570 in reply to Amnesiac3637]

Thank you 😊

[Skulls570]

just a wee update:

Had a call back from the clinical manager of rheumatology today but the rheumatologist in question is not backing down and stands by his decision to discharge me. Their is another rheumatologist the clinical Lead and she’s going to ask if he will see me but he’s on annual leave till start of December so will have to wait but I’m not holding out much luck as he probably not see me.

But in the mean time she told me to get my GP to re refer me yet again, stating my worsening symptoms, then have to wait to be seen.

What a system, this is what the nhs does to patients, leaves them suffering😡

[Angels54]

This sounds terrible maybe contact oaks team , you need to be treated 👍

[Skulls570]

thank you for your support, I really appreciate it 😊 in Scotland we have a patient experience so will differently be contacting them if I don’t get to see the clinical lead.

They are delaying treatment and I see the changes especially in my hands, I can’t make a fist, my fingers are bending especially my little fingers and pulling inwards but it’s still nothing.