Sticky Blood-Hughes Syndrome Support


I have weird dreams every night and wake up in the morning with my body feeling like lead and completely fog bound. It takes me a couple of hours at least to come to and even then I still find I get in a muddle. Turned up for an appointment on the wrong day on Monday. I have to rest for an hour in the afternoon otherwise I would have to go to bed after dinner. Try to plan and pace myself but some days I start to panic on how I am going to find the energy to get through the day. Felt so bad this morning that I took my inr but it's normal.

My thyroid is ok but I was diagnosed with fibro three years ago. I just don't think I am getting proper sleep. Does anyone else suffer like this or know where I can find information? Thanks

6 Replies

Hi I have to pace myself due to flares of my various things and also the fatigue, however my Thryoid all came back clear but I clearly had the symptoms, so went privately and had detailed tests where it all showed up, also the right Professor noticed the sluggish reflexes in my feet. The testing is very very poor and also the banding for results very narrow.

I have put this on previously but will do so again for general interest:



How often do you cheque your INR? Are you retired?

I cheque my INR every second day to have control. We are lucky to have a testingmachine. I am so lucky that I am retired so I can decide to take a rest in the afternoon when I need one.

Also I exercise as much as I can. That makes you sleep better and your memory and thinking ability will improve-.

Best wishes for a good nights sleep. It is morning here. Kerstin in Stockholm


How do they diagnose fibro?



It's done by a tender point test as people with Fibro will have at least 11 out of the 18 tender points. This test more recently is being replaced by pain scoring which can be controversial as it can lead to misdiagnosis?

Have a look on the FibroAction website which is the website linked to the HU Fibro site on here if your interested in finding out more. It can be misdiagnosed for a number of things such as Thyroid, Sjogrens and other autoimmune conditions due to the fact there is no blood test available. Many Doctors stick people with that dx when they can't find anything else wrong or they get normal tests back. In short it can be a bucket for lazy Doctors!


Thank you APsnotFab. That is my impression here in Sweden also.It can be misdiagnosed so easy,

Kerstin .


Hello Panda, I also am having weird dreams. The other night my husband woke me up because I was moaning in my sleep. At t he time I was dreaming that I was at the top of a stair case with something in my hand that I was going to hit someone with. I was really scared in the dream and when I woke up think that's why I was making the noises. But after this I wasn't able to get back to sleep. So my fatigue for the rest of the day was literally unbearable.


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