New to Sjogren's Site

[Katerina1]

Hello, It took me many years to be diagnosed with Sjogren's, having been brushed off with 'you are depressed' 'it's all in your head' 'there is nothing wrong with you' etc. A relief to know what was going on. As well as dry eyes and mouth I experience a foggy head, nausea, fatigue and upset stomach . Also terrifying bouts of tachycardia (crazy heart racing) for over a year. Worst though is intense pain and burning in my legs. Keeps me awake at night and can't go in sunlight. Again years of begging for help before a diagnosis of small fibre neuropathy for which I take pregabalin. Haven't found rheumatologists to be very helpful.

Nevertheless I manage a full life - dance, sing, play musical instruments and swim as well as other things. I don't know anyone with small fibre neuropathy and would be interested to exchange ideas with anyone else who has this.

[MichelleHarris]

Hope this is helpful x

health.harvard.edu/diseases...

[MichelleHarris]

This was posted on the Thyroid site. I dont know if it is helpful also? x

youtu.be/s66LvWQ5Qso(Not working as expected?)

[Katerina1 in reply to MichelleHarris]

This is amazing. I am going to watch it again and make some notes. This is the first time I have encountered anyone with knowledge of this condition. There doesn't seem to be anything in my rural area of the UK. Thank you so much for the link Michelle.

[MichelleHarris in reply to Katerina1]

So pleased its helpful. I know there are a few others with this and they will be along I’m sure. There is a useful post by Twitchy Toes if you scroll down the posts. I take Pregabalin too, its amazing for my night terrors. They have been really bad for years but haven’t had one for months now which is amazing ( think due to NDT and adrenal support with DMAE) though my partner says some nights I’m very jerky, lol x

[Simonebirds]

Hello how did you manage the fast heartbeat ? I was diagnosed but refuse to claim this disease per se . I try to drink smoothies which def helped to heal my lubrication issues . No longer am I dry.

[Katerina1 in reply to Simonebirds]

Hello,

You don't say whether you experience the bouts of racing heart. Mine appeared out of the blue (very frightening) combined with severe burning and clawing pain in my feet and legs. My GP didn't know what to do and a neurologist dismissed me as 'depressed'. The heart racing stopped after about eighteen months. I have since discovered there are medical procedures to deal with tachycardia.

It took another ten years with continuing leg burning and pain before I was referred to a rheumatologist and diagnosed with Sjogren's.

You say you refuse to claim the disease in spite of a diagnosis and it sounds a though you have found ways to deal with your symptoms.