June 28, 2018 at 4:35 pm #159446Hi all – FSHD 'attacks'?
First post here, thought I’d get involved after reading through all the posts I could find.
I’m trying to find out if my symptoms are normal as part of the progression for FSH. Overall I’m not too bad, still walking, pain not too bad but I’m losing my biceps fast and I kind of need them for doing pretty much everything.
What makes things much worse are the ‘attacks’ or spikes I experience. During these attacks I’m generally bad all over but my biceps seem like they literally have nothing to give. They feel different than ‘normal’ when contracted, there’s a lot more strain and stress along with the increased weakness.
These attacks last several days, after this I’ll return to my usual weak state but my muscles feel as I would expect them to.
The trouble is after each attack the overall strength is knocked down a notch, and I haven’t got many more notches to lose before I lose all functionality.
I’m doing 10 minutes of light exercise daily, covering all muscle groups. I’m also taking various supplements like D, B complex, CoQ10, Omega3 and Creatine.
If any one else can shed some light or suggest somewhere to start looking for a solution to this issue it would be a big help. I’m getting no support at all from the NHS and don’t have a good network around me.
JJune 29, 2018 at 1:29 pm #159458Reply To: 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.
So many love songs, so little love.June 29, 2018 at 4:02 pm #159465Reply To: Hi all – FSHD 'attacks'?
Thanks for the reply Mike, good to hear from you.
You’re right, the variability is a big issue. Sometimes I think I might be ok to carry on as I am (self sufficient) then when things are bad I dread the thought of someone having to feed/clothe/bathe me. That’s a terrifying thought for me. Plan A is to hold on as long as I can until a cure/treatment can be developed but that looks to be 5/6 years away at best.
I’m finding getting support very tough, I had a terrible experience with Neuro where I wasn’t even treated like a human being, a person. Physio was similarly bad, taken into a side room and told ‘do something but no too much’, their parting words to me were ‘good luck’. Psychological support has been poor, I need help coming to terms with my diagnosis and what it means for the future, not a generalised group for people with disabilities to ‘reclaim my life’. The NHS doesn’t seem to want to give me one on one therapy.
I contacted MDUK yesterday and was told if I want therapy I have to get back into the Neuro system (which will take 6 months) then get a referral from there (which is another couple of months).
One thing they did mention was talking to an ambassador, someone with the condition which I think would be beneficial.
Even support groups on the net are sparsely populated and people seem to make a post then disappear.
I’ve been investigating all the upcoming potential therapies and existing research. I’ve certainly felt a benefit from all the supplements I listed above so those are definitely helping. I’m interested in adding Triphala and Resveratrol to the mix. Any sort of antioxidants seem beneficial, I use CBD as an anti-inflammatory too, I find it’s also good as a homeostasis drug, seems to put everything in balance, physically and mentally.
Luckily I don’t need physicality for my job and work from home. I wish I was swimming but the username is a reference to Finding Nemo, when times are tough all you can do is ‘just keep swimming’. FSHD seems to be a battle of attrition and I’ve to reduce my field of view from the distant future to what’s right in front of me.
Naturally being skinny and facing challenges my whole life I’d always managed to keep moving forward with the hope that ‘one day’ I’d be able to bulk up and properly get fit. Then with the official diagnosis that rug was pulled out from under me and not only was that not going to happen but things were only going to get worse.
Being trapped in a body that is slowly and relentlessly failing you is a pretty fair representation of a living nightmare so more power to anyone who finds themselves in this position.
All you can do is just keep swimmingJune 29, 2018 at 4:24 pm #159466Reply To: Hi all – FSHD 'attacks'?
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?
So many love songs, so little love.June 29, 2018 at 5:12 pm #159467Reply To: Hi all – FSHD 'attacks'?
Thanks, it’s certainly a tough one but it sounds like you’re getting some good support from NMC, so that’s something at least!
All I need for work is my hands pretty much so hopefully they hold out for as long as possible. My right forearm and thighs are about the only things still working properly.
It’s going to be a series of adjustments from here on out, I’m going to have to get a cleaner for household stuff, I’m going to have to start get the shopping delivered as it takes me about 4 days to recover from the weekly shop. Then I’ll have to see how things go from there.
With all the research being done there’s never been a better time for the development of a potential treatment. The frustrating thing is the amount of time everything seems to take with trials and approvals.
I’m sure it feels to many that we’re up to our necks in quicksand and the clock is always ticking.
For example, there’s a drug that’s already been tested and shown to be safe (in a different study for a different disease), now a company has discovered that it completely stops DUX4 expression and all of its downstream targets and I’m like, ‘that’s good enough for me, just send me the pills!’
Instead we have to wait a year and a half for them to start testing on patients with FSHD. Then another year to write up the results and publish, then they move to phase 3/4, another year or two. Then we need to wait for FDA approval, then we have to wait for EU/UK approval, then maybe we can get it on the NHS.
The whole thing is incredibly frustrating when you’re bucket has a massive hole in it.
Keep on keeping on.
June 29, 2018 at 5:29 pm #159468Reply To: Hi all – FSHD 'attacks'?
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!
So many love songs, so little love.July 2, 2018 at 4:57 pm #159496Reply To: Hi all – FSHD 'attacks'?
PIP is something I need to look into, I dated a nurse once, didn’t marry her though (maybe I should have! lol)
Interestingly I managed to go food shopping on Saturday and not feeling any worse afterwards (touch wood) so there doesn’t appear to be a correlation there. I would love to know what triggers the episodes of extreme weakness.
It sounds like you’re further down the road than I am. Like you said, focus on what I can do, rather than can’t. I’m sure in the future I’ll be thinking ‘remember when you could lift a kettle and make your own food’.
It’s amazing how quickly muscles can disappear (or parts of them) my right bicep disappeared in a few weeks. I saw somewhere (maybe an FSH society talk) that forearms weren’t affected but it’s causing me issues at the moment. How did you find your progression? It definitely seems to be accelerating for me.
I think you said somewhere on this board that you’d tried exercising a few times and only found it made things worse. What did you find to be the least detrimental way forward?July 3, 2018 at 11:58 am #159498Reply To: Hi all – FSHD 'attacks'?
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.
PS Do not take up watching Jeremy Kyle!!
So many love songs, so little love.July 3, 2018 at 3:18 pm #159504Reply To: Hi all – FSHD 'attacks'?
Thanks for that Mike. I also got a chuckle from your age, 675 is pretty good going!
I’m 41 now, made a few attempts in my life to go to the gym but it was always impossibly difficult with very little gains. I remember thinking ‘surely it shouldn’t be this hard?!’
I was into cycling up until my early thirties but it was my shoulders weakening that put an end to that, I had to stop suddenly one day (not that suddenly really) and I nearly came off the bike.
From there it was pretty gradual, I was doing less and it was only when I tried to do something I’d previously not had a problem with that I’d notice how far I’d slipped.
I’ll be honest, it’s pretty terrifying seeing things getting worse and it’s hard not to focus on that. I’m still finding it in me to pick myself up and find some positivity to carry on but I imagine it’s something that requires constant maintenance.
I got diagnosed with labyrinthitis after some extreme dizziness, that’s been a nightmare for about 18 months, again with peaks and troughs that last weeks/months at a time. Makes me wonder if it’s a misdiagnosis after your experiences.
I have a new GP, after 15 years with my previous doc (they moved away). So I’ve got a new doctor along with my diagnosis, I read that most GPs will only ever see one person with MD in their career given its rarity among the population. Last time I went I did a printout for her with my current supplements, what I’m interested in trying, how I’m doing, what I’m doing etc.
You mention pain, and I’ve read it a lot on my travels around the internet. The only time I experience pain is say making a sandwich, lots of repetitive movements result in what feels like a lactic acid build up, a burning pain. When I’m stationary I’m alright for the most part apart from general discomfort due to muscles not holding me up properly.
Is that your experience or is it something different?
Like you said it’s about constant adjustments, changing how you do everything, like lifting a kettle for example, it’s not a pretty sight but it gets the job done. Eating is sitting cross legged, resting my forearms on my knees then leaning forward to get the fork in my mouth.
It’s crazy really but these are the cards we’re dealt.
Thanks for your thoughts and input, I wish there were more conversations like this on the web for others to read.
Ps: Never mind Jeremy Kyle, it’s the Daily mail you’ve got to worry about!July 4, 2018 at 11:54 am #159517Reply To: Hi all – FSHD 'attacks'?
Labrynthitis? My experience is very similar in terms of its symptoms, and that is the very question I am going to ask the university. It seems unreasonable that we can acquire inner ear damage with FHSD yet the balance organ remains unaffected. With it happening in one ear only it would support the development of imbalance. I should say I have had viral labrythitis for around 40 years ( was tested for it) long before my FHSD took any form of hold. It has been coming back to haunt me quite a lot really. Incidentally I was prescribed Cyclazine to moderate the symptoms but I see that it is contra indicated for those of us with neuromuscular disorders.
My pain is very similar all over my body. Much like you it feels as though I have over exerted myself, giving me not so much a burning pain but one that is very intense and aching. Thankfully a bucket full of pain meds helps to control it apart from the joint pain which seems beyond the read of even medical cannabis. On the other hand a simple heat mat works wonders I just haven’t found one that covers the whole body. I wonder if the NHS would fund a trip to somewhere warm to see if it would help? NAH!
I am beginning to suspect that you have not been in touch with the Occupational Therapists who can advise on all sorts of helpful things that can make your life easier. If your GP will not refer you then self refer and see if you can get some things that will make a difference.
You are very right though. these are the cards we have been dealt, and I am always reminded that there are many more worse off than we are. Indeed whenever I visit disabled people of any variety I am amazed at how resilient they are, and strong. They have to fight every inch of the way and yet their approach to life is humbling. I wish I had some of that strength.
WE all face our difficulties in different ways, and it is that diversity amongst us that makes the support so good. we can all bring something to the table and help others.But we also need help ourselves. DO not be reluctant to seek help from those agencies that have been set up to support you. DLA/PIP, Access to Work, Occupational Therapy and many more. They can all make your life that little bit easier.
So many love songs, so little love.
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