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Thank you and lots of luck to you too. I would love to hear how you get on and if you get any improvement. The serum has helped most days with the stiffness but not stopped it entirely on the worst days, although I think without it I would have been much worse. I haven’t had a migraine for a week so that’s a bonus. Just wish I could do something about feeling so weak, faint and exhausted.
Take care, Anna. X
Hi Sarah, I am in Chatham in Kent. If you are ever over this way you are very welcome to pop in for a cup of tea. ☺
When you get the neck pain do your neck and shoulder muscles feel tight and stiff? I discovered something bizarre a few days ago that helps with that. I got some wrinkle freeze serum from Amazon with synthetic snake venom that is supposed to work like botox without the needles. I suddenly had an idea to try rubbing it into the back of my neck and shoulders and it helps much more than deep heat or all the other creams I have tried. It is bizzare really.
Hi Sarah, thanks and I totally understand your frustration. I could talk for hours about the attitude of some doctors. I have never forgiven a consultant I saw many years ago who couldn’t find out what was wrong with me so decided I must have an eating disorder because I was thin and he basically told me to pull my socks up. So in his opinion it was my fault I was ill. I always eat well but at that age I didn’t put on weight and neither did food give me energy. I found out later that I am gluten intolerant and wasn’t absorbing food properly.
I am sorry to hear that the specialist wasn’t more helpful. There are some doctors on that list in Ashford, Kent and if I get the chance to get a referral I hope to go there as it’s less hassle than going to London which we have to do quite often for our son.
I would like to get a copy of Dr Diana’s book but as far as I can see it is just for download at the moment. Have you read it? It would be good to have a hard copy to lend to my doctor if the information proves relevant to me.
You should be really proud of yourself for finding out what is wrong with you and pushing for recognition and treatment. It is so unfair to have to fight the system on top of dealing with chronic illness.
Best wishes, Anna. Xxxx
Hi Sarah, it is such a shame you were forced to go private. My GP had never heard of it but luckily he agreed to refer me to the cardiologist. I read about pots a few months ago and tested my heart rate on my son’s monitor. My son is nearly 23 months and he is severely brain damaged from birth as a result of hospital negligence.
I also got my osteopath to check me and my heart went to 150bpm when I stood up. I don’t have a proper diagnosis of pots yet but something is definitely going on. I had a virus when I was 13 and they said it was post viral fatigue to begin with. I am 39 now and must have spent many thousands of pounds on therapies, supplements and different diets and books. Nothing has ever helped me but I was assuming I had M.E.
Have you been referred to a specialist in your area? On the pots UK website there is a list of doctors all over the country.
I would love to hear how you get on. Take care. Anna. X
Hi Sarah, I have neck pain and headaches most days. The headaches can start at the base of my skull and go into my eyes, temples and down my neck, sometimes involving my shoulders. I was diagnosed with M.E as a teenager but now I am waiting to see a cardiologist because my heart rate goes up high when I stand up and maybe I have Pots instead.
Pain killers don’t help me. Lying down with something warm round my neck helps a little. It is miserable to live like this and I feel I have been abandoned for so many years with no help from GPs and also dealing with people just assuming I am lazy or crazy. I hope to get some help when I see the cardiologist in December.
I only heard about pots recently and my symptoms fit that more than M.E. I would also like to know more about the pain and if it is normal with pots. I hope you get the help you need and that they listen to you. It is difficult to deal with NHS doctors especially if you have researched for yourself it can put their backs up.
Best wishes, Anna.