POTS with Sjogren's Syndrome

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Hi I have Primary Sjogren's Syndrome but was born Hypermobile. It was only after my present Rheumatologist diagnosed that I have scoliosis that I started to research. I found the Bieghton Scale and the Brighton criteria which I match completely. I explained my research to my consultant and she agrees. However while she and another consultant both agree I do have POTS so far I don't have an appointment to see anyone to help me. I have had ECGS and a bubble ECG but they have been taken while lying down. Now the POTS I really noticed post the birth of my last son 29 years ago is getting much worse, can anyone advise me as it has taken decades to get this far, I don't feel time is on my side

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  • Posted

    I suggest you Google "POTS non-drug treatments." You'll find ideas such as wearing compression hose, increasing liquid intake, and increasing salt intake. The Internet is a great reseach tool for ME/CFS.
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    • Posted

      Thanks Jackie done all those, sadly none work! The only time I feel normal now is when I am lying in bed. I was born Hypermobile, then not realising it was an issue as I was very active, I had 3 sons, the problem was I also had fertility issues and was given progestogen to help keep my babies. The final one was concieved on the progestogen only mini pill. With him I didn't have progestogen and I was very sick for the entire pregmancy. That's when the POTS started 29 years ago, 10 years later I was diagnosed with Primary Sjogren's and finally Hypothyroid. Of course I have only found out that I had EDS 9/3 now and so do 3 of my sons. Any advice would be appreciated as I am feeling awful and as we cant afford private healthcare anymore I don't know when I am going to be seen. I guess I will be bottom of the barrel at 68!

       

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    • Posted

      You could try to speak to someone about Midodrine, but I think you'd need a specialist to prescribe it. There's not a lot of great research on effective treatment for POTS, and people's responses seem really variable.
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    • Posted

      Thanks Fidd I have 2 referrals and an appointment to neurology. The last was from a referral in early Febuary but I don't go until August and my husband is exhausted as I can so less and less week on week. The dysautomnia is getting so bad, my rheumatologist is sympathetic but as I had to help her to understand the route cause which is because I was born Hypermobile and have Hypermobility Syndrome and POTS plus all the sicca symptoms of Sjogren's with a positive ANA but no markers for Sjogren's the SSA and SSB it is rather worrying!
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