Private health care appt

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Private health care appt

Postby felinefine » Sat Dec 21, 2013 1:47 pm

I went to see a private rheumatologist on Wednesday, I was fed up with waiting for NHS. It was confirmed its is defo Fibromyalgia. He really said all that I had already found out. He said it was difficult to prescribe meds as we all know its down to our individual bodies on what helps.

He did mention a drug used in USA and its on trial at the moment, its a anti depressant but some have found it works it's Duloxetine, has any one on here heard of this. The Doc is going to write to my GP and mention it. He said there was nothing he could do that has not been done already.

BUT...he said that the new thought is that the chronic condition is not helped at all by not getting phase 4 sleep, I don't sleep well at all, only rem sleep, pain and mind stuff stops me. He said if I could get the right sleep I would be so much better but had no advice on this said it may just happen. I tried sleeping meds they didn't work. He said about aerobic exercise for better sleep but my stroke consultant says I cant do this for a year

I mentioned reiki and healing and meditation, he said that he wasn't qualified to say it would help but to try anything that won't harm me, then laughed and said he'd say swing a dead cat round my head if he thought it would help!!! I have 8 live ones at home hee hee

Just thought I'd let you know how I got on, but would appreciate any thoughts on Duloxentine if you have any experience

xxx
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Re: Private health care appt

Postby FluppyPuffy » Sat Dec 21, 2013 2:17 pm

The use of Duloxetine for managing FM is becoming much more frequent. Compared to other anti~ds, it is a relatively new med, and some have even described it as being designed for FM.

If you use the search box found in the top right corner of each page, it should bring up numerous references to the med. It can also be known as Cymbalta, so you could also search using that as well.

It has long been suspected that not reaching the Stage 4 (Delta) part of the sleep cycle could play a part in FM. A few experiments have been run over the years to see what effects disturbance to the various stages of a sleep cycle could have on people. When they reached the Stage 4 part, it was found that it made the participants start to exhibit symptoms very similar to those of FM, yet when the Stage 4 was undisturbed, these symptoms went away for them.

This doesn't mean that being able to reach Stage 4 would make us all better tho, it's another area that needs to be researched to see how, as well as why, it affects us as it does.
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Re: Private health care appt

Postby felinefine » Sat Dec 21, 2013 3:22 pm

Thank you for your reply, the Doc did say it is all hit and miss, and I have come to realise this. He also said that to beware of using search engine sites from the USA as anyone over there can call themselves Doctor or professor.

Really we are still in the same place, waiting to see what works and what new research brings to us


Thanks again xx
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Re: Private health care appt

Postby whoami » Sat Dec 21, 2013 3:58 pm

Felinefine.....if you go on any site in the US....the Mayo Clinic will give you accurate info.

People can refer online that they are a Dr in the US or anywhere else. There are many sites worldwide that give the wrong info. including the UK

I do agree that our sleep has a lot to do with how we are feeling. My Dr also said if I can get better sleep then I would feel a lot better all around. It isn't a cure but it helps.
Ask your Dr to refer you to a sleep clinic
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Re: Private health care appt

Postby felinefine » Sat Dec 21, 2013 4:50 pm

Ooops I wasn't just picking on the US ha ha I have found some very odd ones here too in the uk... Thanks for mayo clinic heads up :)

Just bought a book by Shelly Bolton A guide to understanding the journey as it seemed interesting. I tend to pick the bits out of everything that sound useful, like as all probably

I have not slept well for years since my hysterectomy 3 years ago, don't know why but that's how it it.


xx
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Re: Private health care appt

Postby zappa20 » Sun Dec 22, 2013 4:22 am

I've read an article on this too. When a group of healthy athletes were wakened over a period of time each time they reached Stage 4 sleep ,they all started to exhibit the burning pain, electric shock pain, muscle pain and fatigue and loss of cognitive functions, experienced by fibro sufferers. I'm personally convinced it plays a major part in causing fibro and of being able to improve it.

Duloxetine or cymblata is also used to treat diabetic painful neuropathy which causes the burning and electric nerve pain experienced by diabetics when high blood sugars have damaged the nerve sheaths. In diabetics the nerve pain is caused by the nerve trying to repair itself and firing off random messages. Which is interesting I think. I couldn't tolerate it either ,made me really agitated with huge dilated pupils, not good for anyone with glaucoma. Hope it works for you.

Getting a regualr decent sleep routine is the best way to improve your sleep levels, but it takes time, and a lot of discipline. Took me months to achieve after I read a few articles on the recommended steps to a better nights sleep. And it's very easy to slip back into bad sleep habits. lol. To stop my overactive brain wandering when trying to sleep, I'd concentrate on a single ,simple object like an Oxo cube or milk bottle instead. Breathing exercises can also help.
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Re: Private health care appt

Postby whoami » Sun Dec 22, 2013 5:09 am

felinefine....I didn't think you were picking on the USA, LOL

I am from Yorkshire living in Canada.
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Re: Private health care appt

Postby felinefine » Sun Dec 22, 2013 10:40 pm

I have read the book by Shelly Bolton A guide to understanding the journey, confused as this says its the lack of REM sleep that makes it worse. Parts of the book were interesting but not much more than I have read on here or googled. And the coping with FMS was just one paragraph.

I went to see Frozen today with the grandgirlies and after sitting there for a hour and half had a mega seize up, so much pain now :-?
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