Hi all – FSHD 'attacks'?

I too have FSH as does my number two son. What you are describing is not unusual for me as I too experience bouts of severe weakness around every six weeks. Having said that there is no ‘normal’ to this condition. Clearly you need to have contact with a neurologist to get the right guidance, if you have not got that contact already I would suggest you do that as soon as you can. I have had a recent episode and it took me nearly four weeks to get back to normal. My own fault in most of these cases as I tend to push myself too much and that is the consequence. Whether you like it or not, rest has to be an increasingly important factor, tempered with sensible exercise. Looking at you name it would suggest you are already getting lots of exercise in that respect.
I would also ask if you have any physio input, especially from specialist MD physiotherapists. They can help you with you exercise patterns and advise as to whether the supplements are helping.
It would be useful to know w a little more about your circumstances. for example how old are you, what help you have had, what have you tried , do you need strong muscles for work, have you any concurrent illnesses? These of course are the sort of thing a neurologist will talk to you about, but they will not be able to wave a magic wand and clear your problem as you well know. They will help to minimise your problem, and hopefully keep you as you are for longer.
It is never easy managing this or any other MD variant as they are all so personal, but getting support and help is you first step.

Mike

Now I can understand far more about where you are coming from and what you are facing. I am happy to talk to you one to one like this as often as you wish, sadly there is no arrangement for Pm function yet.
I can empathise with everything you have said because I have been there already. It has lost me two careers and gives me unending pain, but, as you seem to be doing, you have to keep looking forward not backward. Keep looking at what you can do and not what you cannot. The NHS does not want to give one to one, or even long term therapy here in this area either. I was allowed one physio session and after that nothing. I need regular physio to stop my legs from seizing. I now go to the Neuromuscular Centre in Winsford. You can find it here http://www.nmcentre.com/. It has changed my life for the better in so many ways, and of course I get regular physio too. I am sure that you have researched FHSD groups but I too am not a group person so I have never joined them and much like you I have looked after myself. I have had the benefit of 30 years in the NHS on the clinical side so it does help in that regard. Strange when you mentioned their parting words. To me it was look it up on the internet and come if you have any problems.
Having said all of that I believe the future is positive. I have found new interests since being retired and found an excellent support system both here and the NMC. I am happy to let me be used for any testing via the FHSD Register https://www.fshd-registry.org/uk/. Without prying too much will you need to replan your working life if things continue to worsen?

Mike

Indeed it is very frustrating to hear how long things take. The official answer is of course patient safety is paramount and everything must be tested thoroughly and approved, and of course NICE consideration takes an age because of all the issues they have to consider, mostly cost. But I am with you give me the pills and lets try. I am on the wrong side of retirement so time is not on my side so i do not mind taking a gamble now.
As for the more practical things I wonder if now is the time to be looking for a PA? There are a number of very wise moderators and others on here who can advise you on that, but they can help with a multitude of things like those you mentioned. I guess you are in receipt of DLA/PIP so that could help cover the cost. I already have one whom I married nearly thirty years ago. Little did I know then that marrying a nurse would be so useful later on!

Mike

I am 675 so probably a bit in front of you. I have suffered with it for fifteen years since my son and I were diagnosed. This past couple of years the deterioration has been somewhat more rapid this past two years. My ability to exercise has always been very limited. initially out of idleness and latterly because I cannot do it any more I obtained an electric pedal type exerciser, which I use as often as I can and I try and walk around as much as I can at home and into the garden, but even that is getting harder and harder. I use my scooter so much more than I ever did, simply because of the pain in walking (despite the Sativex) and also because I am getting much weaker now. You talk about lifting kettles, I am starting to struggle with crisp packets now. All of this is not unexpected, not welcome, but not unexpected. I have throughout my time with FHSD tried to adapt to the forthcoming changes. My careers could not adapt so I got a new one for example. However, I should add that I am one of the few with other complications from the FHSD, like for example my right lung no longer works helped by a road traffic accidents, and my left lung is struggling now too.I have pain in all parts of my body apart from the right side of my face, and weakness extends throughout my arms and legs, hands and now neck.
I should say here though, and emphatically too, that the single most important factor in my well being with FHSD has been the staff and facilities at the Neuromuscular Centre. They treat me like I am family, as they do with all of their patients. Their highly trained skills are focussed on muscular conditions and as such they have been able to keep me mobile, and positive, for many years.
Like you though i wish I could determine correctly what gives me the spells of extra weakness and pain. I believe that it is too much exercise at some point with me, but I have no proof, very much as I have no proof about the involvement of the inner ear (giving me a nerve deafness) also giving me the dizzy spells. As you may know inner ear deafness on one side is a factor in our condition sometime. At the recommendation of my physio I am going to talk to the researchers based at the NMC from the university, to see what they can tell me.
I would caution you though not to keep such an intense watch on your condition as you will start to worry about the least little thing. By all means monitor it over a long period of time then you can advise your GP if there are any changes. I would also say that being with one GP only has made a huge difference to my health (as has been proven very recently with a report that was published). He understands my condition and the changes that can be brought about, and will happily let me experiment with different medications to keep the pain under control. As I have mentioned before, having been in the trade I believe has helped in that relationship too, but if you have a GP that you think can relate to you then stick with him/her and always insist on seeing them even if you have to wait a bit longer, it will pay dividends in the end.
I do try to focus on what I can do as I have now accepted that there are many things I cannot. Each day I walk past some 3’x2′ flags I laid when I bought my house. I had picked them up and put them where I wanted them. Now I cannot bend down that far. I also remember that I am no longer young, and by definition age robs you of many abilities, and thus we all adapt in some way as we age.There are things I can do now which I could not do when i was younger, like being creative, reading taking more time etc. When i was younger I was busy with a career, professional body, teaching etc. No time for any of the other things in life. SO as you begin to adapt may I give you one vital piece of advice? Always have a goal, something to achieve, something to do, something to create, something that will keep you mind occupied. For me it was becoming a drone pilot, now I am moving on to other aviation things as well.

Mike

PS Do not take up watching Jeremy Kyle!!