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LUPUS UK
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Lupus diagnoses turns to fibromyalgia

Hi guys, I haven't been on the forum for a while. I suppose I was feeling a bit fed up.

I was diagnosed with with Lupus in February I think after blood tests showed showed inflammation and a physical exam by a physician.

Two months later, due to still having pain despite being on meds, I was still in pain. I must add that my job is highly stressful.

Went to see a rheumatologist and he said fibromyalgia. It was only when I saw a psychologist last Friday that I realized just how resentful I was towards that rheumatologist. He told my husband that there's nothing wrong with me. This while I'm sitting in a world of pain.

The psychologist suggested that I get a second opinion, which I am going to, as my chest pains, heart palpitations, rashes etc does not fall under fibromyalgia. Also in January it was discovered that I had a thrush infection in my oesophogis (something that only happens when one has a compromised immune system). I was tested for HIV and diabetes (because of thrush infection) and it came back negative.

I also have a hatius hernia and had some bleeding in my intestines. Mid year they removed polyps from my stomach. Also have gastritis and IBS.

I'd appreciate any thoughts, as I am so fed up of being made out to be "putting on"

Thanks in advance 🌻

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All I can say is that if you have raised inflammatory markers that makes it far less likely that you have fibromyalgia. Never mind the rest of it. Fibro is NOT an inflammatory disorder. He may not have an answer to the pain of fibro, but fibro is still a painful problem - not "nothing wrong with you".

You do need a second opinion but who would be best for you to see is another question. In the UK it would be a rheumatologist first and foremost - but you aren't in the UK are you.

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Hi PMRpro, thanks for your response. No, I'm in SA.

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You aren't the first in SA to have rheumy problems. And if you are still working - maybe this is time to look for a lot of help there, possibly even, can you continue working? At least in the short term. Chronic illness is a whole new ballgame I fear.

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Hi PMRpro, I have asked for help and the response was positive, however it (the help) didn't last for long.

I know that it's a different ballgame, but presently I can't see how I can leave my job. We just can't afford it.

It's difficult also when one's illness is misunderstood and you look healthy.

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Don't you have the equivalent of Occupational Health where you work?

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I've never really looked in to it...

There is a service where I can call in for mental health. I. E. If I need to talk with someone if I'm in a bad space mentally / emotionally...

Other than that I'm not aware of any other kind of support such as what you are asking / suggesting.

Thanx for that though, I will look in to it

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I agree with PMRpro that fibromyalgia does not mean there is nothing wrong with you. It means he thinks you have a nerve/pain disorder but not an inflammatory condition. Maybe what would be helpful is to ask on what basis the rheumatologist ruled out lupus. Apparently, this is not an uncommon scenario. People have joint and muscle pain and fatigue and the GP runs an ANA, which comes back low positive. If that is the case, the doctor should be able to explain it to you. I really feel for you, being given one diagnosis and now another. The rheumatologist is clearly the authority here. But you may want to seek another opinion. You mentioned inflammatory markers. There are many lab tests they do for lupus so it is the total picture along with symptoms. It sounds like you need clarity more than anything.

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Thanks for the reply KayHimm. Yes, it's not a good place to be at. The past couple of months I just resigned myself to the fact that the rheumatologist is the authority, even though I didn't feel comfortable with the diagnosis. There are just too many unanswered questions / symptoms.

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Do you know what tests were positive initially that made your GP diagnose lupus? Usually they send you to the rheumatologist for a definite diagnosis. Although you have a lot of symptoms, I can see why the rheumatologist did not think you fit a lupus picture. What did they say about your rash?

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Hi KayHimm, I think the raised inflammatory markers, the body rash, chest pain, fever, fatigue, pleurisy and polyathiritis

Past couple of months brought on puffy, itchy, sore eyes as well.

I also have gastritis.

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Well, the best thing to do is ask why the symptoms do not point to lupus. The consulting doctor owes you that and can easily explain it. I certainly can see why your GP was concerned. The question would be what are results of specific immunologic tests. Inflammatory markers like a sedimentation rate are non-specific and can occur in infections. What does he think caused the pleurisy? What was the body rash consistent with? Neither of your doctors have made things clear. Why did the GP diagnose lupus? Did he send you to a rheumatologist for treatment? A second opinion will only be meaningful if you understand why agree with the current diagnosis or why they disagree. There is no need for mystery here. I really feel for you being left in the dark with conflicting diagnoses. It would be helpful if you could get your records. You will need them for the second opinion. It would be good to know what the results of your ANA was and if they have tested for specific antibodies. Hoping you get answers.

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It was a physician who diagnosed lupus, not a normal GP.

The GP 's all said/ thought that I had the flu. I don't have a flu is what I kept thinking.

No explanation for the rash(es).

I have 1 great GP, but haven't gone to see her again after fibromyalgia diagnoses ( I saw different GP' S, hoping to find joy). She finally listened to me.

I couldn't go to her again due to lack of finances. Perhaps I should go to her again, so that she can point me in the right direction.

Thank you again for taking the time to respond to my messages

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Yes, if you had a GP you liked, it is important to stay in touch with her. I am not sure what exactly you mean by a physician, but typically it is a rheumatologist who diagnoses lupus after a primary care doctor has noted symptoms and run initial tests. Wishing good luck with all of this.

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My take on this would be that specialists do quite often get it wrong and if Fibro felt right to you then you would know it and not feel distressed as you do.

Many of us here have a sort of PTSD (post traumatic stress disorder) about the way we feel we have been disbelieved or disrespected by some doctors. As PMRpro has pointed out it is unusual to be diagnosed with Fibromyalgia if you have raised inflammatory markers - unless it’s secondary to an existing inflammatory disease. Blood doesn’t lie although with rheumatic diseases there are no black and white answers so they need to be seen in a wider context.

I hope you can get a second opinion - many of us have to keep fighting until we get the diagnosis that finally feels right to us.

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Thanks Twitchytoes, I am going for a third opinion

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I am so sorry for what you are going through. Most of the Drs and specialists sadly are useless and do more harm than good. You can quite easily have lupus and fibromyalgia. I would research lupus and fibromyalgia online. Get a full list of both conditions and symptoms, Tick off each and every one and go take these and go get a second opinion or even a third if necessary. Get your medical records from everyone who has ever seen you. It may help you as you can find out all sort of information that you never knew as Drs don’t tell us half of what’s in there. If you haven’t had full blood tests done I would ask your dr to have them done. You yourself know your not well and the medical profession are letting us all down. I had to sell all my belongings and I paid twice privately it cost about £400. I then got to see the same bloke on the nhs and am now waiting to hear their findings. I really hope it all gets sorted out as it must be so stressful for you. I hope you get the answers you need and soon. Don’t take what they are saying personal as it just eats away at you. Sadly they are biased, ignorant and downright horrible. They have no idea what it’s like living with a long term illness and not being believed and treated so shabbily is sadly making you much worse. I have M.E and my specialist once said if your stressed and rushing about then all your physical and mental health is affected it makes you so unwell. She said a peaceful mind calms the body and the symptoms are more manageable. You need rest, good food, relaxation and the love and support of friends and family and a great medical team behind you as if not you can develop other conditions. I would definitely get a second or third option or as many as it takes to find someone who will take you seriously and get you the help you need. I can’t believe how insensitive your specialist is. He ought to be ashamed of himself who needs someone like him so he has to go. Wishing you all the very best and I hope your feeling much better soon.

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Thanks for the reply Jeromicus888. I'm so sorry to hear about what you had to go through!! Omw...

Thank you for the advise. I'll do just that. I'll even look at Me symptoms and note that as well.

Keep well

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You need to be your own dr and specialist combined. I only got my diagnoses when I researched each and every symptom and I told them I had M.E lupus and fibromyalgia before them. After getting M.E and getting diagnosed they put everything down to M.E. Then when I went to see them and told them I had fibromyalgia they put me off for a year and left me get ill. They will leave you untreated till it gets worse which is not good as a specialist told me the faster your symptoms are taken seriously evaluated and treated the better. Don’t always believe what they tell you as now my Drs are saying oh yes it’s just your lupus when the rheumatologist himself is unsure. Never mind you will get there in the end as your now your own gp. Good luck

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My rheumatologist put me on no medication either and symptoms are just progressing

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It’s shocking as my rheumatologist took a year to talk about the lupus medication he gave me the leaflet for the lupus medication and finally almost a year later actually I got to have the lupus medication. It’s such a long and worn out process. Has he made you another appointment or has he discharged you. If they are still seeing you it’s good it means they are still researching you and your symptoms if they discharge you then they have given up. There are other specialists out there so I would suggest if you don’t get anywhere at all you need to go elsewhere. If your dr is not helpful you may find seeing a gp privately may help. At methley Park in Leeds you get half an hour for £90 with a dr who can look at multiple symptoms and illnesses. He can make his recommendations on who you should see. You then go back to your gp with the findings. If you can go private to Speak to another rheumatologist at another hospital this may help. It cost me £220 to see a rheumatologist privately but it did speed up the process. You really do need your medical files as you can get more information about your health. Look online about his you put in a request for your medical notes under the freedom of information act. Tell them it’s just for your own personal use and it’s to be filed away as sometimes they get a little cagey about handing them over. Also I would go back and insist you are sent to another specialist. Take a friend or family member. I know it’s really so frustrating when you are unwell and no one is listening. Sadly it takes so long to sort out whilst you get more unwell. It’s such a shame they are so slack and unsupportive especially when you need the help so much. I hope you get help soon. Let me know how it goes. Take care.

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I get frequent candida in my mouth and oesophagus, and I am not immune compromised. I get it due to my scleroderma and the constant antibiotics and esomeprazole that I am on for life, so you can get it for other reasons too.

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Thanx MissusTee. I was not on any of the above that would explain the infection.

Fortunately the gastroenterologist is very thorough.

In June he had to remove polyps from my stomach.

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Slow gut mobility and small intestinal bacterial overgrowth can cause it too.

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Hello I had a diagnosis of fibromyalgia at one point which I was never convinced by all in all it took 5 rheumatologists and a long time , to get any help I was told incorrectly my ANA was negative, because the lab only tested common ones and my ANA was an unusual one.I had to keep on seeing doctors and documenting my symptoms for years until I finally found my current rheumatologist I was pretty ill by the time I got help.I am now on immunosuppressants and feel much better. My diagnosis still isn't totally made with aspects of vasculitis, sjogrens syndrome and Connective tissue disease as I have lots of symptoms and also an autoimmune liver disease PBC which was diagnosed before all this, many people seem to have problems getting a diagnosis especially if they are unusual so If fibromyalgia doesn't explain your symptoms keep questioning and keep a record of symptoms with photos of any swelling or rashes etc and don't give up I hope you get someone to help soon.Jane

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Thanx Jane.

I'm sorry that it took you so long. Gosh, it's frustrating...

I must admit, I'm a lazy bugger when it comes to documenting every symptom.

In my defense (lol), I still work a full time, stressful job, and can easily work for 12 hrs a day, so by the time I get to rest, I just want to pass out, especially when I'm in a flare, which is often.

Hopefully I'll be seeing a new doctor in January. I will write everything down. From the rash on my leg to the ulcer, itchy, sore, puffy eyes, etc, etc.

I pray that he listens to me!!

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Hello I found a symptom tick box chart with a date column the easiest way to record symptoms easier than writting long hand and easier for doctors to review and used aphone to take pictures my doctor also asked me to take my temperature during any flares.I know it's hard particularly if your working as a consequence of the delay in diagnosis I ended up having to give up my career.I also found I was in fact understating my symptoms as I had got so used to feeling awful my doctor said that that's common but I have to say plenty of other consultants seem only too happy to minimize and dismiss symptoms I think I am lucky with this rheumatologist!!I hope you find the right person to help you soon.Jane

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Hi Jane, my plan is now to look at various conditions and note which of the symptoms I have. One of the scary ones is that things fall out of my hands. I love cooking and baking (and eating), but have become fearful of just dropping things. My poor husband is so patient

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Have they checked you for M.S check that too

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Yes, that's what I intend to ask

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inflammation is common in all ailments, and would refrain from stating fibromyalgia has not relation with fibromyalgia that is so far from the truth.

On the other hand if anyone would like to know about ways to help help the immune system I am happy to share in a private platform.

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