Sleep

Hi Herbie

I know just how you feel as I have Degenerative Spondylitis full spine which affects my neck, shoulders, arms aswell as lower lumber region and legs. Although only 6 years so far since I had a proper nights sleep, as you say it has an impact on all my life.

As for beds this is what I have found. 'I researched, asked questions, spoke with health officials and after evaluating what I had learned my husband and I invested in a 'forever bed' at the cost of over £2,000 pounds....ouch!! We also bought pillows at £80each.

For the first month it was heaven and we were pleased with our investment. Sadly since then we have discovered it would t have made any difference which bed we bought. Reason...the bed is not the problem it is my BD and Back. Some night I have fairly good sleep but most not good at all. I tried sleeping in my son's ordinary divan whilst he was away at Uni and found the same pattern. Also when we go to visit our other son for 6 weeks at time I often find I may sleep better there for a while. I find the worst matresses for me are memory foam and latex because they mould to the body but I have to move around and change position a lot because of the pressure on different parts of my body and these matresses just make things worse.. Sometimes my couch is the best place to sleep.

I tell you this as I really don't think it is worth paying out a lot of money just on hope!!!

I know that DREAMS beds offer a deal where you buy a bed and if at anytime within a year it is not satisfactory for you then you can change it just Once for a bed the same value or more. Not sure if this applies to all their beds or just the high end cost.

Sorry it's not very good news. Oh one other thing about a month ago I had to attend A&E as my upper leg locked like cramp....extremely painful, wouldn't wish on anybody. They didn't know the reason even after X-rays but gave me diazapram for 2 days.....oh boy did I sleep we'll. not that I would recommend this but how about a sleeping pill occasionally??? Not for me but whatever makes you feel better to cope another day.

Hugs and smiles always and a healthier New Year

Billi

Thanks very much for your reply Billi.

You've told me exactly what I needed to know.

I am relieved in a way as I won't have to face the expensive cost of a new incredibly expensive mattress.

I'm due to see my rheumatologist in April so I'll ask his advice about possible medication to help me get a normal nights sleep.

Many thanks,

Stephen ☺

hi, I had one and found I overheated on it. there are new ones with cooling gel in them to reduce the problem somewhat.

The other problem I found was that it felt like a rock when I was sick and extremely uncomfortable. I got rid of it.

Hello Herbie,

I wonder if you could get your rheumatoloist to refer you to a pain clinic. I had real problems sleeping, and was put on a low dose of amitryptiline to be taken late evening, before bed-time, and I haven't looked back since.

Although I am on many drugs for the BD, the extra pain relief has been very helpful.

Hello there Suzannne, Many years ago I was on a low dose of Amitryptaline but due to side effects I was moved onto low dose Prothiaden.

This was increased last year but to no effect.

I even went to a Pain Clinic last year but the doctor didn`t know anything about the treatment or symptoms of Behcet`s so he started asking me.......

He suggested Amitryptaline but when I told him I was already taking Prothiaden/Dosulepin he just referred me back to my rheumatologist.....

We are 2nd or even 3rd class patients in the NHS today. Feel ashamed that I ever worked for them....

I've used melatonin for sleeping and it works great....but will have to purchase it online.

Also have had a brilliant drug from my meurologist which would normally be an anti-depressant called mirtazapine and this really does work wonders for sleep at the lowest amount possible [7.5mg which is half a tablet] taken before going to sleep.

The only bad side affect for some is weight gain as it doesn't even seem to leave you drowsy all day. So not a problem if you need a bit of weight gain...unlike me

The other thing is I managed to get an ebay company to make a hospital solid foam mattress which has a breathable zipper cover and I have this on an electric bed where I can raise my legs/head up and down.....definitely the best so far for pain levels.

Know how you feel as I really have suffered with sleep issues [including apnea and extreme deprivation]

good luck

hi herbie

I agree with what has been said but just to add,I suffer from absolutely terrible migraines (as one of my worser symptoms) and was put sodium valproate in mix it worked well for those and my neurologist is obviously fully aware of my sleeping problems (I have gones weeks on few hours max sleep) and as well as what's been said I was on amitriptyline too (If you haven't already I would say give it a try) but now has me on 'sodium valproate' and 'amitriptyline' which completely knocks me out!..do your research but he says these work together and the valproate enhances amitriptyline affect you are talking to a well seasoned insomniac so I can't tell you how much I recommend this!

Hi herbie

another thought about the migraine headaches is taking a herb called feverfew as this helps to keep them at bay. Again it is a natural herb and so would have to be purchased in a healthfood shop or online. But I have actually had this recommended to me by Doctors so in this sense it must have some benefit as Doctors generally don't recommend natural remedies....if you are really keen you can grow it and use it like a salad leaf or in sandwiches.

I have taken it in the past myself and had good results on headaches in general. You might want to ask your Dr's though before considering taking it.

Hi Herbie,

I am so sorry you feel the NHS has let you down. I was a senior sister for many years, so also worked for them. Thank goodness for them, though, as our treatment would be unbelievably expensive in most other countries.

Although rheumatologists are often involved in looking after BD patients, you need to see a specialist in vasculitis. Have you asked our GP to refer you to one of the centres of excellence set up by the Behcet Syndrome Society? As these clinics are in London, Birmingham and Manchester is one of them accessible to you? They have gathered so much information I am sure they will be able to help your predicament.

17 years is far too long to 'put up' with your predicament.

Best of luck.

As a former radiographer I was involved with the process of differential diagnosis on a daily basis. If anything I'm angry with the negligence of the medical profession who have made a choice to only address some pathologies and not all pathologies. In radiography we had to be able to address and provide accurate imaging of all manner of rare anatomical abnormalities and in fact those were the most interesting to learn. In medical schools however there has been a culture of not bothering to learn enough to the detriment of afflicted patients who suffer as a direct result of their ignorance. That's what I mean when I make the point about us being 2nd or 3rd class patients.

I have met so many ignorant doctors over the last 15 years.... Genuinely shocking that they have so much power and that their ignorance is so well protected.

I did ask to be referred to the London centre however my present rheumatologist wants to have a go first before he refers me on. The fact is though that after.17 years I find myself at the very bottom of the treatment ladder if I'd only just had my first "flair".

So I'm having to go thru the routine of being put on the cheapest drugs first - wasting six months at a time to find out that low and behold the cheap drugs like. sulphasalazine don't work.

In reality I've been constantly ill with no meaningful remission and I'm almost 49 years old now. My massive flair-up that was misdiagnosed happened when I was in the prime of my life at age 31 back in 1996.

As my Dad and his sister both died of cancer around the age of 70, I have a distinct feeling that I only have around 20 or so years left..... Just hope I can get the mortgage paid by age 65.....

If I won the lottery the first thing I'd do is sue the General Medical Council for professional neglect.

Hi Herbie,

I can quite understand how you feel. Behcets is such a difficult disease to diagnose, as you already know.

In 1976, I gave birth to a beautiful boy after a healthy and normal pregnancy. About three days after the birth, I started to feel very unwell and was transfered to a very famous private hospital in London for tests. After a stay of three weeks, they had no diagnosis. I was more or less told to get on with life (they were hoping it was an unusual post natal glitch and my health would return to normal, eventually).

During the following years, I soldiered on, fighting fatigue, unexplained skin problems, ulcers and arthralgia, being diagnosed with herpes, and even non-Hodkins Lymphoma, until one day in 1998 I collapsed. I had suffered a TIA, and still the medics waffled about scratching their heads. It was not until, in 2003, I had such bad ulcers I could not walk without excrutiating pain, my GP sent me to see a renal specialist who held a vascullitis clinic. (As you know, most GPs have never considered a diagnosis of vascullitis, so I was very lucky).

This consultant diagnosed me immediately, and has since suggested that I probably have been suffering since the birth of my son, 27 years previously!!!

As I gave up nursing in 1989 because I could not continue due to health issues. Behcets disease, or the non-diagnosis, had ruined my original career which I loved, and also helped considerably in the eventual breakup in my first marriage, but I am not bitter because I understand how medicine has advanced over the years and that this disease is so difficult to diagnose.

I hope you eventually get the correct drugs to help you. It is stupid of me to tell you not to feel the way you do, I think we all have suffered the non or late diagnosis problem. You should not feel like a second class patient because of the way you are being treated. You are still eligable to ask your GP for referral to the CofE in London. Take the decision out of you rheumatologist's hands and get some relevant treatment as soon as you can.

Best of luck.