Fibromyalgia or Lupus

[Frenchfancy]

Fibromyalgia or Lupus? -( apologies awful photo quality my phone is ancient! Pic was a mild flare up, much brighter wen on holiday?)

Hi all, I’ve had an apt with a rheumatologist, she said straight away that I don’t have Lupus as my double strand test was negative. My ANA was positive but she said that it was ‘insignificant ‘ ?? My GP told me it was a lower end result 1:6 ?

And diagnosed Fibromyalgia.

I have almost all the symptoms of fibro however my only concern still is the rash on my face?

I get a red rash across my cheeks & nose when I’m exposed to sunlight? Within ten mins of being on a recent holiday my face was bright red, I explained to the doctor that it isn’t sunburn! It comes & goes.

I also suffer from recurrent kidney infection? ( 4 in 5 months)

Has anyone had similar experience pls as I don’t think my GP would be happy to refer me for 2nd opinion as they said the rheumatologist has final say? I understand that the double strand is negative however nobody can seem to answer why I get the rash? As this isn’t a fibromyalgia symptom?

Any advice greatly received thanks!

[Paul_Howard Partner LUPUS UK]

Hi Frenchfancy ,

We're not medically qualified here so I cannot say whether the diagnosis given by your rheumatologist is correct or not. Certainly the anti-DNA antibody test (double-strand test) is used as one of the diagnostic criteria for lupus as it is rarely seen in people who do not have lupus. However, this test is not as sensitive as some others (such as ANA) and is only positive in around 40-80% of people with lupus (depending on sample and testing method). This means that a negative test shouldn't completely rule out a diagnosis of lupus - but your consultant may have used another basis as well.

Did you discuss the rash with the rheumatologist and show them any photos? Did they have any comments about a possible cause? There are some other conditions that can potentially cause sunsenitive skin rashes. If your medical team believe it is unrelated to your other symptoms perhaps a referral to a dermatologist would be required?

If you are unsatisfied with the diagnosis and treatment plan you have been given then you could ask your GP to refer you for a second opinion, explaining your concerns. If you do seek a second opinion you may want to try and see a rheumatologist with a specialist interest in lupus. If you'd like to let me know what area you live in, I'd be happy to provide you with information about any lupus specialists closest to you.

[Frenchfancy in reply to Paul_Howard]

Thanks very much. I live in Buckinghamshire in the UK

[Paul_Howard Partner LUPUS UK in reply to Frenchfancy]

It is difficult to say where your nearest lupus specialist may be based because Bucks is quite a large county, but it is possible your nearest specialist centres would be in London. London has two LUPUS UK Centres of Excellence - Guy's Hospital and UCH. You can learn more about these at lupusuk.org.uk/centres-of-e...

[KayHimm in reply to Paul_Howard]

Paul — please clarify what a second opinion in the UK actually means. If a GP sends a patient to a cardiologist and the cardiologist determines symptoms are not cardiac related, are patients entitled to see another cardiologist? I am asking because it is important for people to know whether a second opinion applies to an already-diagnosed disease or applies to a disease that has been ruled-out. Thanks. K

[Paul_Howard Partner LUPUS UK in reply to KayHimm]

Hi KayHimm ,

If you are unsatisfied with the diagnosis/treatment plan from a hospital consultant then you can discuss this with your GP and request a second/further opinion. If your GP agrees to refer you to a new consultant, the consultant will be told that this is your second/further opinion. They'll also be sent any relevant test results or X-rays previously carried out.

This doesn't mean the new consultant will automatically take over your care. If you want to be treated by the new consultant, this needs to be arranged with the doctors and hospital.

Regarding your specific example; one doesn't have a legal right to a second opinion on the NHS, although a healthcare professional (such as your GP) will consider your circumstances and whether a second opinion is needed. In many cases (regarding diagnoses such as lupus) a referral for a second opinion is granted. You can request a second opinion for any reason, although the decision about whether to refer you will lie with your GP essentially.

[KayHimm in reply to Paul_Howard]

Thank you for your clear reply. That makes sense based on the responses we get here. There was one case in which many of us here — and the GP — thought the rheumatology consult was insufficient. He did want to send the person for a second opinion. With rheumatologists being in short supply, I think countries are dealing with the shortage problem in different ways. My concern is that, particularly in a government-sponsored system, they have to limit referrals to certain specialists in order to be able to treat the patients who fall under a specialist’s care. I have read that a fair amount of rheumatology referrals are for ruling out autoimmune disease in a patient with fibromyalgia. Rheumatologists are pressuring GPs to do a better job of screening. I will try to find that article. I bring it up because, although some patients with fibromyalgia may go on to develop lupus, it is still rare. Of course, it can never hurt to ask a GP for a second opinion. I just fear in many of these cases the request will be rejected, the patient will have to pay out of pocket and any additional testing rheumatologic testing would be prohibitive. Of course, this is my opinion and sense of the problem. In cases of fibromyalgia in which a rheumatologist has seen no evidence of inflammation, no organ involvement, no positive lab evidence of autoimmunity I wonder if encouraging the person to watch symptoms and report anything new to the GP is wiser. Again, this is strictly my opinion.

[Paul_Howard Partner LUPUS UK in reply to KayHimm]

Hi KayHimm ,

I recently attended a lupus event at the Royal Society of Medicine and there was a brief discussion about GP referrals and how often they may not be necessary as the patient does not have a rheumatic disease. There is a lot of pressure on rheumatology departments which are often underfunded and do relieving some of this pressure would be great, but the message from the rheumatologists in attendance was that they would rather have someone wrongly referred to them, than wrongly not referred to them.

I would certainly be concerned if GPs were advised to be even more strict about which patients they refer because we already speak to people every week who are fighting to get an important referral and really struggling to carry on with their symptoms.

We need more sensitive tests and additional biomarkers to be identified to help doctors more accurately detect possible cases of lupus. Hopefully more progress will be made by researchers soon.

[KayHimm in reply to Paul_Howard]

I was referring to NHS benefits in my question about second opinions.

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Other rheumatic diseases can show positive ANA too not just Lupus.

Also your rash might be Rosacea as Lupus butterfly rashes and Rosacea can be very hard to distinguish.

A lot will probably depend on how or if your symptoms progress or not. If they do then this will be the time to pester your doctor for another ANA test and a referral for a second opinion. Fibromyalgia tends to stay the same whereas Lupus and other rheumatic diseases such as Sjögren’s tend to worsen over time.

[KayHimm]

I think what the doctors are saying is that the constellation of symptoms does not look like lupus. There are many things they look for. In particular, they are looking for evidence of inflammation in various parts of your body. A low positive ANA occurs in healthy people too so, again, it has to be taken in context. Ask your doctor why he thinks your rash is not related. I have some rashes that are related to autoimmunity and some that aren’t. Certain rashes that come and go can be from flushing. Can you take a good photo? Your symptoms could evolve. Right now, though, I would not think your GP would recommend a second opinion. He should be able to give you a good explanation. Are they treating your fibromyalgia? It is so frustrating when things are so unclear. Hope talking to your doctor will help. K

[MissusTee]

Also, I am anti smith positive, so there are other biomarkers.

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Hi so sorry you haven’t got the answers you need. I too have the same rash as you. I have M.E, fibromyalgia and am currently seeing a rheumatologist for suspected lupus. I was told you need a few more blood tests done over a few months or longer as the test results can alter. I would ask for a second opinion as I have done a lot of research and know it’s sometimes difficult to diagnose in some patients. It’s takes a while to get a definite diagnosis and it’s very frustrating and stressful as it’s a long process but eventually they get there in the end. I am currently on the lupus medication. Had terrible side effects stopped taking them now back on them till I see someone in a few weeks time. I would take pictures on your phone of ant rashes or swellin not just on your face but elsewhere then get a print out of all fibromyalgia and all lupus symptoms and tick the symptoms you have. Also it would be helpful if you got your medical records from every dept and Drs. It’s called a access request. It takes 40 working days or less. Read through everything and highlight anything not right or you may think could be lupus. I got my records and found lots of things the Drs didn’t even tell me I had. This led to me getting a referral to a rheumatologist privately and also now on the nhs. You must have all the information to hand to show someone at the hospital. If your not happy I would get a second and third opinion and even go as far as to change gps or get a private gp app. Methley Park can do a half hour appointment with a gp for less than £100. I hope you get the help you need. Also I remember reading that even with lupus if your not in a flare and your symptoms have calmed down then it may not show in some blood tests. I hope you get all the answers you need. Take care and good luck.

[KayHimm]

I think this is wise advice. To pay out of pocket for a second rheumatology opinion does not make sense unless there has been a change in symptoms. The proposed new criteria for SLE requires a positive ANA of 1:80 as entry. I don’t know ANA values. Is this higher than what people like us with other diagnoses can have with ANA? I know my doctor emphasizes that SLE has a high titre. You seem to know a lot about the values. Sometimes they dismiss a value outright as in Frenchfancy’s case and not sure why. Just to clarify, there are many who come for support here who have conflicting results and new symptoms. Then it does make sense to pursue a second opinion. K

[KayHimm]

I completely agree that all patients have a right to a second opinion. The question is when is it worth paying out of pocket for? I would think that for many utilizing the NHS system, it would be very costly and disappointing. It is not a question of « siding with doctors » but doing what everyone does here and try to see when second opinions are worth pursuing. There have been several people posting here recently who I have encouraged to seek second opinions or to try to get a sub-specialist’s opinion. One was later referred to a UK lupus center, one has been called back to her see her GP with positive results, and one is going to an academic center in the U.S soon. So I think my gut was pretty good. Like many here, I was a diagnostic dilemma. You don’t need to a doctor to understand what they look for when diagnosing autoimmune disease. There are many articles in which rheumatologists describe the process. I would be happy to give you my reasoning in any individual case about a second opinion. I am flattered you think I know a lot. My doctors do too. I have had an autoimmune disease for over thirty years, so I have seen a lot!

[KayHimm]

That makes perfect sense. Good to hear the rheumatologists’ opinion and to know they are advocating for patients. I have a feeling, though, they would not advocate for an immediate second referral with no change in symptoms. They do set guidelines and have more respect for each other, I suspect, then we imagine. Thanks for all the information and for staying abreast of everything!