LUPUS UK
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Please will someone help me

I've been putting all my trust in seeing a rheumatologist as I have pericarditis , effusion,Costochondritis ,mouth ulcers, facial rash, painful weak hands and many many other symptoms. Today I received a letter from Rheumatology cancelling my appointment and without ever even speaking to me or seeing me, telling me I have fibromyalgia and no treatment is needed. I have been in chronic pain for 15 weeks and battled to get anyone to hear or believe me. This has crushed the last bit of hope I had out of me and totally disempowered me. Of course I have symptoms of fibromyalgia!

But I also have many more that are not.

The most screamingly obvious thing is that fibromyalgia does not cause inflammation to joints, muscles or other tissues. I am so so upset and angry at the utterly disrespectful and callous handling of my illness.

I just sit here in despair. I don't know how I'm supposed to cope with chronic pain, and no medication to help me with this out of control attack on my body. I would be so grateful to anyone who can reach out to me and offer me even a small crumb of advice. I'm completely lost right now.

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Hello Nikkilama,

That sounds like a terrible situation - as well as a bit strange. It looks like you posted recently about this - so did your GP make the referral to rheumatology? Won't they back you up? - at least get a ANA test done for you? If you can get a bit of cash together (£150-200), you could get a referral for a private assessment? X

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It seems most strange that you have been dismissed by your consultant with an alternate diagnosis without them even seeing you?!!! What has led up to this - have you had any tests done to date by your GP for example - do you have any inflammatory markers or antibodies that are suggestive of an autoimmune disease? If you have already been diagnosed with pericarditis, then that is a condition caused by active inflammation in your body - something often seen with lupus or other autoimmune conditions. If you are in the UK then I would suggest in the first instance going back to your GP and discussing the reasons for this letter from rheumatology and if you can be referred elsewhere. If you think you have been treated inappropriately, then you can complain through PALS but I would try to find out some answers first if I were you.

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This is so bad - you poor thing - but unfortunately it's not that uncommon for GP referrals to be rejected by consultants if they look at your blood results and see no sign of anything untoward. You need to go back to the GP I'm afraid. Many resort to private for this reason. It shouldn't happen ever but I know it does x

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Thank you. It's the total lack of compassion that has floored me. To not be heard or believed is devastating as you deteriorate and no one cares.

It's harder to bare than the chronic pain itself.

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I can understand that. It's like a door has shut before you've even reached it. I have been fortunate never to have this happen with rheumatology - because of raised bloods mainly. But it has happened several times with other specialising including ENT and Gastroenterology - and those both span some of my worst symptoms.

Personally, if I were in your shoes, I'd give myself a short period to lick a large wound and then gather myself up, go back to the GP armed with as much info as possible but looking for information from them. Do you have copies of your blood results, have you had your thyroid tested and have results? If so and you can identify a pattern that you may be relevant then highlight this. Doctors can get it spectacularly wrong sometimes. If they believe you have Fibromyalgia as your main condition then make them prove it by reading up about seronegativity. In my experience the only way to get doors to open is to do your research and then blast them open with the results of your research.

Getting your GP on side if you can will be very useful. They don't like having patients handed back to them in this way in my experience - it's frustrating for them too as they are now expected to treat you for something diagnosed without actually seeing you in person. In my opinion rheumatology is far too complex to diagnose anything or rule anything out without seeing the patient at least once in person. The problem here lies with a beleaguered health service and over brimming rheumatology clinics with too few consultants. However they always take a big risk diagnosing Fibro as the primary condition - let alone without any face to face contact.

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Thank you so very much. I cannot tell you how much I appreciate you writing to me in this way

Feels like a life line of understanding. 🌻

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You are very welcome and best of luck in getting door to open wide now 🤞🏽🤞🏽🤞🏽🌻

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I think I would want an explanation at least!

The trouble is that there are still Rheumys (and GP s) out there who totally discount Fibro. Sounds like you got one of them, the first one I saw was hauled over the coals and told to go research a bit more by his boss lady who is now my Rheumy!

You could have a look at the NHS site and see if there is a hospital near to you with a Rheumy who has an interest in fibro, and ask to be referred. Personally, I would have the guy sent one of the fmauk info packs from the mother site, he sounds like he needs it.

Back to your GP, I think, and also PALS, they are there for this stuff so it's worth trying.

Good luck

C.c xx

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This is very distressing. While I do have a rheumy I have been messed around in the system, but nothing like this. I'd suggest as others have, and go back to your GP, ask what was in the GP' referral letter, and get a copy then ask again for a referral to a different rheumy. Contact PALS to help you if needs be.

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Thank you. I have already asked for all my medical records from the docs and shall do so from the hospital. I am talking to doc today. I will be asking for the seventh time for a referrals

The problem is that I feel too tired and too ill and to upset to fight. Yet I must fight it seems. And that's what makes me so angry. Why should a sick person even have to fight. ?

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True - but reality is that many of us do so you will have to put these heavy emotions to one side if you want to get heard.

Many doctors see high emotion as sign of anxiety and depression if you have had the Fibro label so if your bloods don't represent your physical state then your brain will have to do the work instead.

For this you need good sleep and excellent nutrition, some deep breathing and an awareness of how your local rheumatology service operates. You will need to be cunning and steely 😎 and it sounds like you're already well on the way. PALS might indeed be a good point of support but a good GP would be the best place to start if you have one. 🤞🏽

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Thank you. I agree. It's a catch 22. Show anxiety at the way you are treated at your peril. And I will contact Pals.

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Yes I know - felt bad saying this actually because keeping emotions in check under the circs is so hard. But as you know we really have to find ways to harness our disappointment and anger to good effect. On a different level I'm having to do the same with several presumed diagnoses. In my case it's all put down to Sjögren's but tests or relevant referrals confirming are not forthcoming! X

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I'm so sorry to hear that. I work as a psychotherapist and hear each day of the trials of being believed when you look ok and are not bleeding. And now it seems it's my turn. If I can support you by listening I will if you wish. I hope you can get sorted. All the best. 🌻

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That's good of you but I have a firm diagnosis and treatment now so I feel you are the one needing the support. I was just using my experience as an example of how, even with a diagnosis I can trust and a good rheum - things are usually horribly complex.

Without a proper diagnosis it can be a nightmare as you're finding - and this is why I'm encouraging you to be as methodical and clear headed as possible about getting to see a good rheum. And by good I mean one who has a relatively open mind if your bloods are negative for autoimmune diseases. And you should check for yourself that they are of course - always query everything is my rule now!!

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Sending a cyber hug. Yes, there's something very wrong with the way so many of us have to fight to get anywhere. PALS can support you, if you haven't tried them already.

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Hi Nikkilama,

I'm sorry to hear that this has happened and I would echo the advice of other community members and encourage you to raise your concerns with the hospital's PALS team (if you are in England). You can find their information here - nhs.uk/Service-Search/Patie...

If you feel you have symptoms that aren't satisfactorily diagnosed and are not happy with the treatment plan, then you can ask your GP to refer you to a different rheumatologist for a second opinion. It may be worth seeking a referral to a rheumatologist who has a specialist interest in lupus. If you'd like to let me know whereabouts you live, I can provide you with information about any lupus specialists we know nearby.

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Hi Paul. Thank you very much for your support. I've taken your previous advise and contacted NHS complaints advocacy. I am also going to contact the General Medical Council about the callous indifference of being diagnosed and got rid of by email. It is not ethical and the man has no integrity whatsoever His brutal disregard for my feelings has upset me deeply and made me angry. Which of course is making me more ill and my pain level is now up to 9. Thanks for your advice.

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I had a few problems to begin with when I had plural effusions amongst other symptoms and I felt I had no alternative but to get seen in the london lupus centre as Dr's didn't know what was wrong and there was such a wait with the nhs. They are brilliant there, but I had to pay privately as I was so ill and desperate. Within a week I was on treatment. I don't know where you live or how far you are from london, but it was how I got some help. Otherwise maybe you could see someone privately more locally to you for an initial appointment and then go back on the NHS for your tests. I hope things settle for you and you feel better soon, it's miserable to be so unwell xx

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Thanks for writing. Because of a kind friend I can have one private appointment only. So I am choosing this with great care. I have no problem with traveling to London if I can manage it. Would you mind telling me the name as I would like to look them up.

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Hi, just seen your comment now, I go to the London lupus centre at London Bridge. There's a few doctors there, I see dr Colin tench and he's been brilliant. But I think their all very good there. Good luck, I hope you get some answers soon, I'm keeping my fingers crossed for you xx

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Huge thanks for kindly replying 🦋

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Dear Nikkilama, it is so upsetting that callous medics can disregard people who are gentle & caring & so in need of their presumed medical expertise without any obvious thought. It sounds like a CARING rheumatologist is definitely part of the answer. The other part is the great advice from all those who have replied to you to be put to action! It is so hard to think that medics can dismiss & reject a patient without any personal assessment of their symptoms or illnesses. I have come out of a consultation more than once crying & upsetting myself over a doctor's 'couldn't give a damn' attitude! Like Twitchy says I try now to adopt a 'steely' attitude & 'harness my disappointment'. I must confess it doesn't always work, but I am learning so much from this group & managing to stand up for myself a little better. Please try to involve your GP if possible & explain your distress & disbelief of how you were treated! I so wish I could say much more positive things & talk about the goodness throughout the NHS, ... unfortunately not! However, there are very professional & caring medical personnel out there & I have experienced their knowledge & empathy. My hopes are that you can get a foot on the right track, yes, you possibly will have to push for it. I have been told by many specialist nurses that those who scream loudest are heard! It may be neither your, nor my style, but perhaps an firm insistence on being referred to a different rheumatologist might just be heard. Please, as much as possible keep all that emotional energy for yourself & be relieved that Dr. Rude was so wrong for you. However it is very right that a reason for his shortsighted decision is made clear to you. Good Luck Nikkilama, please let us know how things work out for you. Thinking of you X Pixiewixie

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