I was diagnosed with CFSME in 2014.
There is too much for me to type out and so I'll try to be concise and up to date.... a year ago when I went to a private menopause clinic, I was educated quite a bit about histamine sensitivity and MCAS. (I was always an allergy prone person... since childhood but it was never really bad enough to take antihistamines. And I've always been sensitive to all pills/potions etc, so I avoid as much as possible).
It was a very informative hour consultation and I discovered a lot about MCAS. I was told that topical oestrogen gel that I had been using for 14 years since hysterectomy 'may' have been a culprit for becoming ill and causing the CFS. Apparently oestrogen is very high in histamine and women can even react to their own oestrogen and progesterone causing issues. My particular symptoms that bother me the most are full body muscular skeletal pain and exhaustion. Also inflammation which comes and goes but is very noticeable for me because I'm usually slim. The doctor told me that the pain and inflammation were most certainly a reaction to histamine and whist as a menopause doctor she endorses oestrogen for women like me, if I have histamine MCAS issues, the oestrogen is making me ill.
Armed with that information, I slowly decreased my oestrogen dose. As I'm 62 now, I no longer need it for protection against osteoporosis etc, as I've been taking enough of it during the important years. When I had a week or so without it, the inflammation vanished as did the pain.
I went to my NHS GP who is really good and always gives her patients around 20m minutes. But she is stretched and only part time. I saw her last week and luckily she was aware of MCAS (many GP's are not). She has made a referral for me and I have been given two options.... Heartlands Allergy clinic at Birmingham Hospital, and Oxford Radcliffe Allergy clinic. I could only choose one and I decided on Birmingham. But I'm really not sure if they cover auto immune conditions like MCAS. It also looks as if I may have a 6 month wait, too. I've been ill for so long now and I get very depressed from time to time.. clinical depression, not the blues. And so when I have that and feel I'm wading through wet cement, it's hard to do much at all.
I wondered if anyone had been to the Birmingham Clinic. I keep feeling that the best NHS clinics would be in London but I'm hoping I'm wrong.
And there... I've written more than I had wanted to. It's getting on for 3am here and insomnia abounds.
I did look at Dr Alexandra Croom but I simply cannot afford any private consultations now. Not working has made it very difficult for me.
Oh and I have pretty bad brain fog currently, just to make things really interesting. When I get brain fog I find it difficult to articulate, so I hope this is all clear.
Looking forward to some positive experiences re NHS clinics.
There is too much for me to type out and so I'll try to be concise and up to date.... a year ago when I went to a private menopause clinic, I was educated quite a bit about histamine sensitivity and MCAS. (I was always an allergy prone person... since childhood but it was never really bad enough to take antihistamines. And I've always been sensitive to all pills/potions etc, so I avoid as much as possible).
It was a very informative hour consultation and I discovered a lot about MCAS. I was told that topical oestrogen gel that I had been using for 14 years since hysterectomy 'may' have been a culprit for becoming ill and causing the CFS. Apparently oestrogen is very high in histamine and women can even react to their own oestrogen and progesterone causing issues. My particular symptoms that bother me the most are full body muscular skeletal pain and exhaustion. Also inflammation which comes and goes but is very noticeable for me because I'm usually slim. The doctor told me that the pain and inflammation were most certainly a reaction to histamine and whist as a menopause doctor she endorses oestrogen for women like me, if I have histamine MCAS issues, the oestrogen is making me ill.
Armed with that information, I slowly decreased my oestrogen dose. As I'm 62 now, I no longer need it for protection against osteoporosis etc, as I've been taking enough of it during the important years. When I had a week or so without it, the inflammation vanished as did the pain.
I went to my NHS GP who is really good and always gives her patients around 20m minutes. But she is stretched and only part time. I saw her last week and luckily she was aware of MCAS (many GP's are not). She has made a referral for me and I have been given two options.... Heartlands Allergy clinic at Birmingham Hospital, and Oxford Radcliffe Allergy clinic. I could only choose one and I decided on Birmingham. But I'm really not sure if they cover auto immune conditions like MCAS. It also looks as if I may have a 6 month wait, too. I've been ill for so long now and I get very depressed from time to time.. clinical depression, not the blues. And so when I have that and feel I'm wading through wet cement, it's hard to do much at all.
I wondered if anyone had been to the Birmingham Clinic. I keep feeling that the best NHS clinics would be in London but I'm hoping I'm wrong.
And there... I've written more than I had wanted to. It's getting on for 3am here and insomnia abounds.
I did look at Dr Alexandra Croom but I simply cannot afford any private consultations now. Not working has made it very difficult for me.
Oh and I have pretty bad brain fog currently, just to make things really interesting. When I get brain fog I find it difficult to articulate, so I hope this is all clear.
Looking forward to some positive experiences re NHS clinics.
