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Fatigue etc…
I still haven’t got a definite diagnosis as now awaiting results from whole genome sequencing – the opinion is that I have one of the Limb Girdle types.
I’m finding my walking is getting more and more of an effort, and the fatigue getting worse. It’s quite frightening as I can feel my legs shaking and sometimes particularly later in the day my middle seems to give way! If I go out one day – and even walk a short distance I’m really shattered the next day and if I don’t go out and try to recover it’s even harder to get going.
Do other people have these problems and how do you cope with it? – any tips would be really appreciated.
Thank you
Janna
Reply To: Fatigue etc…With apologies for the delay, my earlier message to you seemed to have been deleted, I would say that most of us get fatigue with our MD. However, I have tried to live by the image that my body is a battery. If I use it it gets discharged. If I use it a lot it discharges more. SO with that in mind I am careful how I discharge the body, keeping the power, for me at least, for when I use it more. Of course any battery needs to be recharged. For humans this comes from rest, and of course from food. Having enough rest and using the right food can make a lot of difference. In addition I wold also consider how good the system is that takes the food to your body. Have you had a blood test recently, or even one the GP MOTs that you can get to ensure that things are going correctly. For instance I found my red blood cells were not working as they should and I was short in vitamins B12 and D.
DO come back to use to let us know more details and we may be able to help more.Mike
So many love songs, so little love.
Reply To: Fatigue etc…Thank you – the battery comparison is a good one.
I think my problem is that because moving about the house is an effort I tend to sit too long to recharge my batteries and then find it even more difficult to get going!
I have had a lot of blood tests recently and they have all been normal. I get breathless even when doing small things (like taking washing out of the washing machine) but my lung function and heart eco tests were fine so my theory there is that it’s just the sheer effort of doing things which causes me to feel short of breath and shattered.
I have had some phsyio and am awaiting an appointment for an OT home visit with a view to maybe having some alterations done to make things more accessible in the home as I don’t want to have to move house. The phsyio sessions have now stopped and I find it quite hard to motivate myself to do the exercises when I feel so fatigued even though I do know they will help.
On a positive note – I’m really thankful for all the helpful info on the MDUK website particularly the factsheets on the different types of MD as I would have been really floundering without them.
Thanks again
JannaReply To: Fatigue etc…At least you are going in the right direction but pease do not stop there. I too had the problem with physios. One treatment and then I was given a leaflet. I tried rubbing the leaflet all over but it made no difference, so I needed to find somewhere else. There are a few specialist centres around the country who can not just understand the condition but also deal better with it. I use the NMC at Winsford as it is relatively near home. They have keep me moving about whereas without the I doubt I would be there now.If you can indicate roughly where you are based it may help us direct you a bit more positively.
OTs have also been an amazing support for me. They have made useful suggestions about my life at home, in addition they have supplied me with things like a riser/recliner and hand rails for use outside. Usually this may mean having a social worker involved, but they can help you if your want to claim benefits like PIP, which will help you through you life.
Its important also to make sure your GP is onboard and also understands what is happening with you. MDUK do have a module that will gain your GP education points. Worthwhile getting the GP to go through it. Many with MD forget how few of us there are, and thus there may well be a situation that you will be the first the GP has seen.
I wold also mention seeing a dietician. They can help you make the most of food and its affect on your battery charge.
Still much to be done, but we are here everyday to help you through the process.Mike
So many love songs, so little love.
Reply To: Fatigue etc…Thanks Mike.
I live in the North of England.
The dietician is a good suggestion as food can affect our energy levels and sometimes trying to keep going physically and eating the right food can be a bit of a slog!
Unfortunately as I’m receiving state pension I don’t qualify for PIP.
As you say a lot of GP’s probably haven’t come across many or any patients with MD and as I’m still awaiting a result from the genetic tests as to what kind of dystrophy it is I suppose it’s a bit difficult for them as well.
Thanks for the information it’s very much appreciated.
JannaReply To: Fatigue etc…Again I apologise for the delay I have been away for treatment at the Neuromuscular Centre in WInsford. They are doing a great job in keeping me mobile. I wonder also if you are claiming Attendance Allowance, https://www.ageuk.org.uk/information-advice/money-legal/benefits-entitlements/attendance-allowance/. Supposedly the replacement for PIP for those over pension age.
Mike
So many love songs, so little love.
Reply To: Fatigue etc…Thanks Mike for the information.
It’s great you are getting some treatment which is helping. I have heard they are really good at Winsford – it’s a pity that there are not more places like that.
I haven’t applied yet for Attendance Allowance. Although I would meet some of the required criteria for the lower rate, I don’t meet all of them. I will have another look at the form and maybe ask the OT for some advice when they visit.
The Age Uk info sheet is very helpful.
Thank you
JannaReply To: Fatigue etc…An excellent idea. Getting the ‘right’ answers is important, and professionals know how to word things better. Remember also that these forms require you not just to put down the truth but also about your worse days, and not the times when you can manage. I could manage getting up the stairs for example, it wold take me half an hour, but I could manage it, and I would be exhausted as well. Be honest on the form but above all be honest with yourself.
Mike
So many love songs, so little love.
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