Rheumy appointment today update

Hi everyone,

I had my appt this morning, I now have a second condition, to go with my seronegative inflammatory arthritis, fibromyalgia.

Rheumy says, all my blood work is normal, but i still feel absolutely terrible.

The last 2 weeks I have been having difficulty in opening my eyes when I wake up. Especially my right eye, my balance is somewhat off. Thursday I found myself walking normally to walking really slowly, almost slow motion. I was very much aware of what was happening to me but I couldn't stop it.

Mouth sores coming and going, now when brushing my teeth my gums really do bleed.

I have seen the dentist, says my oral hygiene is good.

Some of my symptoms: exhaustion, dry eyes, joint pain, stomach ache, dizziness, mid-upper back pain, fevers, heart racing, (at times I can hear my heart beating) hair loss, headaches (at times they flicker) brain fog, face legs neck stomach and arms itching, fine rash on face which I had for 2 days, plus swelling of the face,lasted 2-3 hours the list goes on.

Now I have bronchitis.

I feel desperate. Where do I go from here?

I am so confused. How can I have such symptoms and have, normal blood work.

Rheumy will see me in September because my arthritis is under controll, as for the fibromyalgia take pain killers and go for physiotherapy.

I need help.

G.G

7 Replies

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  • Hi GG,

    I am so sorry you are feeling so miserable and so understand that feeling of being abandoned. My Rheumatologist diagnosed me with Sjogrens although all my bold results were normal, he said thirty percent of patients with that we're negative. Since then, and that is about eighteen months ago it is looking as if it is developing into Lupus too.

    This consultant has never mentioned fibromyalgia to me but the others seen over twenty years of misery all said fibro and not autoimmune because of the blood.

    I think there are some consultants more enlightened now and will treat you anyway. A friend of mine was dismissed for thirty years and told she had fibro, and the suddenly after those thirty years

  • ----------sorry it just zoomed off!!!!! Will continue--------

    Anyway, after thirty years the blood test turned positive for Lupus but by then she has organ damage from the years of no treatment. So I think it is right that they do treat you if they have any suspicion it is autoimmune.

    What gave my Rheumy the confidence to treat me was that I had a dramatic improvement to my symptoms with steroids. I had a spinal neck fusion and the Neurologist gave me a huge dose of long acting steroid and lo and behold I became a new person!! It did of course wear off and we could not maintain the high dose safely but it showed them it was autoimmune.

    Are you on any Prednisalone? Trouble is a small dose may not be enough initially to suppress you symptoms.

    I am up in Scotland.Where are you?

    I just found by asking around I got to my present Rheumy who is excellent, takes me seriously and is willing now to try micophenolate as I also have liver issues.

    I did go and see him privately for my first consultation but then he put me into his NHS clinic. I often find a private appointment at first gives them much more time to consider all your symptoms and take you seriously, but first you need a good Rheumatologist.

    Do your research and maybe if you are near London you could see one of the experts there at St Thomas.

    Hope you get progress, there is nothing worse than feeling the frustration and misery of all this. C xx

  • Hi Powerhouse

    So sorry to read you have entered the world of auto- immune struggles because of bloods being negative for inflammation despite symptoms. Sadly you are not alone if it's any consolation. I've just had similar example at GP yesterday and have spent 29 years trying to get a definitive diagnosis. It doesn't get any easier to cope with either!.

    I'm sorry that you've got bronchitis, that will make you feel ill. Is it being treated?

    Mouth and gums, I have the same problems and can recommend Difflam Mouthwash. You can buy it or have it on prescription.it's very effective.

    Fibromyalgia is a difficult condition that is treated with painkillers. Good that your Rheumy recommended physio for it. He could have dismissed you and it!.

    The one piece of advice I can give you is if you continue to feel poorly throughout this year you can always try and get an earlier Rheumy appt by ringing the clinic for a cancellation. I have done this frequently and it can work. It's also a good idea to get an earlier appt because it helps to concentrate the Rheumy's mind that you need help. This is how I've had treatment over the years.

    How did you get on with the steroids?. Did they help the joint pain?. Short courses of them might be a treatment option for you . It's also important to have your GP and Rheumy working together to help you.

    Keep posting on this forum, I've had so much benefit from learning I'm not alone in my struggles!.

    Hope I've helped if only in a tiny way?

    Take CareX

  • Hi Powerhouse,

    I'm sorry to hear that you are struggling getting a satisfactory diagnosis. This can be even more difficult when you are presenting with negative blood test results. Have you considered seeking a second opinion? Perhaps from a lupus specialist? It might be worth asking your GP for a referral of this nature, as it is a long time to wait until September. If you let me know whereabouts in the country you are then I can possibly let you know where your nearest specialist would be.

  • Hi power house I have lupus sjogrens hughes ( aps) lichen planus of the mouth throat ears vulva and vagina, hashimotos thyroiditis and fibromyalgia..endometriosis and hydradentis supporativa.,so as yo can see I'm an autoimune kind of a girl!,,

    so I hope you don't mind my suggestion...( because I've read your symptom list ) and its worth pushes doors in our pursuit to better health ( I'm not a Dr but a sufferer!)

    I would to go to a Thyroiduk.org. Website

    I would join Thyroiduk. Health unlocked forum

    And read ....symptoms etc..

    And even if you GP has said your thyroid blood results are fine!

    I have had Hashimoto's thyroiditis ( this is the autoimune hypo thyroid disease ) for 7yrs but untreated for many years.

    I was treated for some time by my endo ..couldn't tollerate Levothyroxine ...so ended up on T3 ( liothyronine )

    Won't blast you with info at this stage ..

    When I was diagnosed with lupus Sjogrens fibromyalgia and APS 3 years later my rheumatologist said that when my thyroid meds were correct I wouldn't have problems with my fibromyalgia ..and that has been proven,

    There is , if you read ThyroidUk site ( and many other sites) a link with fibro and hypothyroid ( hashimotos) though so as not to offend or upset other readers I do realise fibro comes with its own list of symptoms and debilitating lifestyle..

    Most people are tested for thyroid problems by their GP.... They will do a TSH ( thyroid stimulating hormone test ) if the results come back within the reference range ( variable between different countries and if in England different area health

    authorities..)

    they say your fine ,but you might be in the upper end of the

    range ..( not fine!) as we are all different ! what they don't do , until your out of reference range ,is run an anti TPO blood test

    ...these would show your body is attacking your thyroid (

    ) your level should be 0 .. Any rise would show signs of Hashimotos..it can fluctuate for years ...then crash .. Once tested and the levels are raised ..the Gp or hospital doesn't usually test again ..as you have a diagnoses ... Hashimoto's thyroiditis ..

    I'm not aware if you have had your thyroid tested or your results.you are legally entitled to ask your GP for a printout of your blood results if you have had blood tests ..you can post for

    help on thyroiduk forum ,..there are more knowledgable members than me!

    Please read the symptoms ..I wouldn't want you or anyone else

    to suffer needlessly ...sorry it's such l long reply ..

    With best wishes x

  • Hi power house did you ever read my reply re Rheumy update?

  • Hi, I'm interested in your difficulty opening your eye. Is it happening during the day or during the night? Does it resolve on its own? Does if feel as if your brain is telling it to open but it doesn't open, or is it a functional inability to open (i.e. it's sticky).

    Secondly, have you recently started any new medication?

    I ask because I have a similar problem with my left eye. I've seen neuro specialists and the diagnosis isn't clear. I'm still investigating the cause but I'm interested to see whether you experience the same.

    As for normal bloods - I have the same, thank God for my rheumatologist who put me on a trial of Prednisolone and when I improved, he agreed to treat me properly. Keep pushing and challenging this - ask your rheumatologist whether he has considered the fact that you might be sero-negative and when he dismisses that, point him to some reputable websites that say the contrary. And if all fails, tell him to address your symptoms, not the tests, after all that's why he's there, to help you not to show his so-called knowledge.

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