APS Fibromyalgia and what else

Hello all, it's been a while since I last posted but have been having a stressful time. After my initial diagnosis of fibro I was told to just read a leaflet and go swimming which was not very helpful in managing my conditions however everything was ticking along until just before Christmas.

I suddenly began getting a very dry mouth along with dry eyes and a flushed cheeks so back to the Dr I went. She referred me to another rheumatologist who has been fantastic and who has undertaken various tests and provided hydrotherapy

Anyway I have been found to have mild carpal tunnel but this afternoon I have to go and have a mouth biopsy to rule out Sjorgrens syndrome.

The purpose of my post is to find out how many of you have been diagnosed with other conditions following your initial APS diagnosis

Claire

10 Replies

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  • Hi, well done on getting so many appointments, however alongside Sjogrens, the possibility of Thyroid issues is something to be examined, and when you have low Thyroid Action, having carpel tunnel and a wealth of problems is not unusual. Unfortunately most doctors are welded to the idea that the TSH test is fit for purpose which I along with others do not believe to be the case. Often patients with so called Fibro, if they go off and do these tests privately, find they have a Thyroid problem as I did, too me years to pass the TSH test. thyroiduk.org.uk/tuk/testin...

    If the doctor/consultant says you are fine, and has only done the TSH test, then remain suspicious.

    This alongside testing your Iron, B12 and vitamin D to make sure they are not low, and if your iron is low, and you are put on any thyroid medication, always a four hour window away from any iron you have taken. I also enclose the symptoms of Hypo Thyroidism: thyroiduk.org.uk/tuk/about_...

    I had a friend who was very very certain she had Fibro, who got worse and worse, finally she did the private testing, and found that she was actually very ill and had an underactive Thyroid. TUK have a forum on this HU platform and you can use the same profile/password etc etc.

    MaryF

  • Thank you Mary I will definitely look into thyroid testing more closely as the routine bloods I had including thyroid were all normal. Not sure if they tested my vitamin S this time but have had 2 bouts of low vitamin D in the last 3 years

    Claire

  • I too have fibro, and my drs always tell me to exercise but the problem is that all the damage APS has done to my body with the clots I had, has made it very difficult to do so. I was told walking would help and get easier the more I dI'd it, but I pushed myself hard and the pain was terrible, then I ended up hurting all day. The more I pushed myself the worse I became. So I stopped doing it as I was not getting better at walking. I walk a bit at home, but as soon as the pains start, I lay down. I get so frustrated.

  • Also I was told that I have arthritis in my joints. The arthritis came about after I became ill, as I had normal x rays not long before I became sick. Osteoarthritis is what they told me.

  • You need a Specialist!

    Fibro are often misdiagnosed from Doctors who do not know much of APS.

    Did you find hughes-syndrome.org ?

    Kerstin

  • Hi ccurrey79,

    Are you on Warfarin?

    I had Carpaltunnel-syndrome 10 years ago and the that Doctor wanted to operarate but I did not like that. After I started Warfarin on a rather high number of INR (3.2 - 3.8) those symtoms disappeared.

    I am primary APS (no other autoimmun illnesses so far) but we can have "pieces" of the other syndromes that often go hand in hand with APS, namely Sjögrens, SLE, Thyroidea. Fibro and MS can often be misdiaghosed together with the others.

    Best wishes from Kerstin in Stockholm

  • Hi Kerstin

    No I'm not on warfrin as my most recent bloods came back negative. I only started aspirin a few months back.

    It's sjorgens that they are trying to rule out and i have a mouth biopsy now on the 25th July

    Thank you for your kind response

    Claire

  • Hi Kalykrill

    I have to admit I'm terrified of doing more damage than good but definitely found the hydrotherapy helped.

    I hope you find a little relief at some stage and would love to know when I signed up for this crazy illness

    Kind regards

    Claire

  • I am surprised you are only on Aspirin as you were diagnosed several years ago for APS.

    I have read that you have symptoms of APS also. I think you should be on Warfarin or some other anticoagulation drug. Aspirin is an antiplatelet drug and they usually start with this but if you still have symptoms they usually try an anticoagulation like Warfarin.

    As you live in England look for a Specialist of APS!

    It can be difficult to diagnose Sjögrens. A biopsy would help. Anyway you should see a Specialist of APS, probably a Rheumatologist who also knows about Sjögrens. It is important that you are properly treated for your APS as so many are negative when tested but that does not mean that you do not need anticoagulation when you once or several times have been positive and also have symptoms. These can go up and down.

    This is a rare illness but it can be treated with a proper anticoagulation!

    Kerstin

  • Many thanks Kerstin I will definitely look into the specialist further

    Claire

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