awaiting diagnosis

Not sure if this is the best place to post........

I've been ill for just over 2 1/2 years now. In that time I've had my appendix, gallbladder, and left ovary removed. I've also had exploratory surgery, ovarian cysts drained, and viral meningitis. On top of all that I have extreme fatigue, joint pain, swelling, and stiffness (mainly hands, knees, ankles, and feet.) I get extreme nausea/ sickness, crippling lower abdo pain, pluretic pain on right side, brain fog,chilblains, mouth and nose sores, numbness, tingling, and pins and needles in hands and feet. My toes and fingers turn blue and are always freezing cold- I also have large, painful bunions on both feet which are made worse when wearing socks (thus making cold feet even colder). Recently I have also had sortness of breath and chest pain when lying down.

So far I have been diagnosed with: Chronic pelvic inflammatory disease (swabs, blood, and fluid samples all come back negative for sort of infection), pelvic congestion (large bulging veins seen in pelvic areas during operation), Raynauds, inflammatory arthritis, carpel tunnel syndrome......

After being fobbed of by numerous doctors, turned away from A&E, and made to feel like a fraud, I have finally been referred to Rhuematology for suspected SLE.

I am seeing Prof Bruce at Manchester Royal (he is really nice, as are all the staff. Finally feel like someone is listening to me and will hopefully be able to get to the bottom of it all). He has ordered numerous blood tests, chest x-ray, breathing test, Echo test, and nerve test- results are due in a couple of weeks. In the mean time he has put me on 10mg steroids (instead of naproxen), given me wrist splints, and i'm still on 10mg bu trans pain patch, along with tramadol, and cyclizine.

As well as Lupus, vasculitis, hughes,systemic sclerosis, and scleroderma have all been mentioned

Has anyone had any similar experiences/ advice?????

n.b, i have had several miscarrages in the past.

6 Replies

  • Hi and welcome, I am glad they are testing you for lots of the diseases you mention, if you have Hughes Syndrome/APS it will more than likely show up in your blood test results, please do have a look at the information carried on our charity website:

    What I will also mention to you, is that if you have Hughes Syndrome and autoimmune conditions, it is very very common to have a problem with your Thyroid and unfortunately the TSH test which is done is not very reliable. People with Thyroid conditions, particularly hypo thryoid, often get a gall bladder issue, and carpel tunnel etc. If patients do not initially pass these TSH tests they often get sent away with a 'Fibro' diagnosis, which may be part of the problem but very unfortunate if you do indeed have an untreated Thyroid issue.

    Please make sure also that you are given blood tests for your levels of Vitamin D, Ferritin (iron) and your B12. If any of these levels are low you will feel considerably more unwell.

    You do sound very unwell, and hopefully if you have been referred to a rheumatologist they will look into your issues very carefully. Please be aware that it is possible to have Lupus and or Hughes Syndrome/APS and for the tests sometimes to be negative. I also enclose for you here a list of the symptoms from Thyroid UK, if you suspect you have a Thyroid problem do join their forum also on this platform.

    If you do indeed turn out to have Hughes Syndrome/APS feel free to use our forum, and also be aware that Lupus UK are also on this platform, you can have the same user name etc for the other forums I mention.

    One final point, often those of us with bad inflammation do better removing gluten from our diets. I am one of those and have multiple diseases.


  • Thank you very much for your reply, and the additional info you have suggested.

  • Hello Heather & welcome.

    My colleague, Mary, has already given you some great advice, with which I fully agree.

    Please make sure that they do test you for APS/Hughes syndrome as well as for SLE.

    Keep in touch and let us know how you get on.

    Best wishes.


  • I will do, Thanks

  • Hi Heather...My, you have been in the wars, so sorry to hear all of that. Mary has mentioned a few things that should be checked and you may also want to ask them to consider Behcets when they get the test results back. There are many conditions with cross over symptoms which means that you end up with an either or or both. If the wrong dx is given the difference in medications can make all the difference for instance with Lupus and APS Plaquenil would be prescribed but with Behcets it would probably be Colchicine as an example.

    Do also remember that tests can be seronegative but you can still have the condition, so it is important to be under an experienced Dr who can look at the BIG picture taking into consideration all your history and symptoms. Good Luck.

  • I think Bechets has been mentioned already but I will double check at next appointment.

    Thanks for the advice, I will update with test results and diagnosis when I get them x

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