March 30, 2019 at 12:29 pm #176674Pain from falls
Hi! I havnt commented for a long long time. Have been reading and being there but just trying to get on and be less focussed on Md.seemed possible As I stopped using a stick and Felt id adapted and was functioning better. It seems my MD is very slow progressing so that’s good. I lost 3stone though diet alone and that helped my pain and made it slightly easier to walk. However, I do fall several times every couple of months. Not so bad considering most ppl don’t know there’s anything wrong with me. However, I think I’m falling over Because some foot drop and also sometimes I just trip on things like all ppl do but can’t save myself and end up on the floor. This week I fell and have now got very sore feeling muscles like I’m bruised inside all over. Not much of a fall really, just on the high street- went forward and got back up pretty quick. Small bruise to knee. But so bloody tired today- even more than usual. I feel I sleep for at least a quarter of my weekly days off, and after a fall it’s worse. Anyone else get sore muscles after a fall? Perhaps from tensing? Is this An MD thing?March 30, 2019 at 12:39 pm #176675Reply To: Pain from falls
Hello Pips and welcome to the forum. As you know falls can come from many sources, not necessarily foot drop, but for us MD folk foot drop can be important . Falling, though whatever cause, can cause damage to tissue and muscles by stretching them in ways they are not supposed to go, muscle strain. You did not say which muscles are hurting after a fall. You also did not say if you feel dizzy or disorientated at all before the falls Perhaps going back to using a stick may help prevent them.
Do please keep us informed.
So many love songs, so little love.March 30, 2019 at 3:41 pm #176676Reply To: Pain from falls
Thanks for the quick reply! I have been told I’ve got an issue with footdrop. And I didn’t fall when using a stick. However, I struggle to do my job using it so stopped using it. Which I know means I probably need to alter my job slightly! Not my needs. But it’s hard. I accepted using it but then when I stopped it felt so good! I’m lucky to still be fairly similar to when I first noticed things changing. I have to climb up my legs to get up from floor (gowers) and am slow on stairs. Can’t climb up a big step without using my arms. Can’t run anymore. Get very tired often. That kind of thing. It most affects me when trying to keep up with my family. I wake to turn over in bed now as it seems to take more effort. Sex is more challenging too!! Haha.
So today, my shoulders ache, my hips are sore and my legs are a bit more wobbly. I landed on my knee, Hand and then fell in a slump onto one hip. So I can see why one side hurts more than the other. I didn’t feel anything before I fell. No dizziness or faintness. Just fell! Not sure if I caught my toe on something and then couldn’t right myself or if I just went down.March 31, 2019 at 11:40 am #176678Reply To: Pain from falls
It does sound so much like many of us find as our MD progresses. You mention that you stopped using your stick as it affected your work. Could you possibly tell us how it affects you, and are you getting any help from Access to Work?
So many love songs, so little love.March 31, 2019 at 2:42 pm #176679Reply To: Pain from falls
Thanks for replying. It’s actually nice to hear others have experienced the same during the progression of MD. I still often wonder if I’m making excessive fuss. When I accepted it and used a stick I felt ‘disabled’ then I changed jobs and lost weight and that culminated in me not using the stick. Then I thought perhaps I’d given in to disability a bit too early before! So I’m always confused. No one would know I have Md if I don’t tell them so I feel like an imposter.
My job is not something I seek any help or access to work with. I am a teaching assistant in a reception class so it’s physical with a lot of time spent on the floor. When I was using the stick I’d stopped working and was volunteering with older kids and pursuing a degree aT home. Someone I knew wanted me to be more confident in my abilities and gave me a job. However, I know in my heart that she was kindness of wrong- the job is something I love but is not good for my md. I work a 3 day week and spend 4 days trying to study and look after my family but actually spend 4 days napping and crying and often unwell And rundown. I do have a very busy family life so I am always busy and don’t have a lot of sleep. SO I’m my own worst enemy. Any advice for work?April 1, 2019 at 12:59 pm #176701Reply To: Pain from falls
Your own worst enemy. Yeah I know what that feels like, to this day. But I also had a realisation that there was a point I had now reached where it was time I no longer cared about being an MD sufferer, and I became me who has MD, and I was going to suffer less. So I took advantage of every piece of help I could. I use two sticks. Not the wooden ones but the modern walking poles you can buy. They are very popular in our area for walkers, and for a Norwegian walking club we have. I have a black zum zum (mobility scooter), to match the colour of the car I built many years ago (Lamboughini Countach replica). I have a reclining chair which stands me up and which everyone envies. I know one guy who turned his into a replica Harley Davidson. SO you can enjoy yourself because you have MD not in spite of it. Oh and did I mention doing two wheel turns in my scooter at the NEC?
I have been challenged too about not being sick enough to have a blue badge, but now I am content to admit that I have MD and use every contact, good or bad, to spread the word about it. In a classroom is a very good place to start. perhaps you have bitten off more that you can cope with I do not know. If you are working, studying and bringing up a family at the same time it will be hard. Not having a lot of sleep comes with parenting. I can still remember being up all night with a crying child and then going straight to work. But lack of sleep will affect your health if you make a habit of it. Sleep is nature’s way of putting your body and your mind, back together.Nature should not be ignored. Thus you end up napping to try and catch up, and tearful because you have not caught up.
If you are no longer working you perhaps need to decide what do you really want to do. Perhaps astronaut and cage fighter might not be in there, but you can be in with a chance of PM, teacher, scientist in fact many many other things. Access to Work is there to help you not only make that decision but also to give you and a potential employer, the support necessary to make a go of it. When I employed people, I always found those with disabilities worked better because they were more committed to being in work than able bodied people. Get that message across and the world is your oyster. I guess from what you have said that teaching of some form is the way you want to go. How do you think your MD will hold you back somehow?
So many love songs, so little love.April 1, 2019 at 6:19 pm #176716Reply To: Pain from falls
You yourself will know when your ready for sticks etc.
Two things when reading. I thought do you have orthotics? when I walked I had special arch support insoles made for inside shoes to prevent foot drop and be more secure standing.
sleeping and crying:- could very well be depression or fatigue. both can be side effects of md breathing. have you had your breathing checked. if your not getting 100% quality breaths this could lead to fatigue, headaches. being tired even when starting the day. having to nap. reduced quality breathing can increase trips and falls.
Hows your night time. Do you find yourself restless in bed. sitting up more than normal or preferring to be propped up in bed. headaches. Pale, cold skin or even bluish
"""""""What doesn't kill you makes you stronger""""""Cat (Mod)ModeratorPosts: 1,002Joined: 20/09/2010April 1, 2019 at 8:30 pm #176718Reply To: Pain from falls
Mike, thank you for such a kind and positive reply. I do agree that embracing help Is the way to go and had installed grab rails and grew to love my stick. It’s because I started new job and then found I was coping ok that I didn’t stick with the aids. Silly me. Now I’m exhausted. I’m not sure I’d ever pop a wheely on anything though! Even with more energy! Cat, I’ve often question my nighttime breathing and had a monitor on and underwent a sleep study. I do suffer daily headaches and wake exhausted. However, they are happy my breathing is unaffected. Apparently my sleep is fine. I do find it noticeable when I turn over in bed now. Sounds like not much to those who suffer much more but it is just a strange development in recent years as I remember not noticing things like turning over in bed! I also get aching hips and legs when on my side.
I have a foot up aid which clips into shoe and holds my ankle up but I don’t use it anymore because it doesn’t go with my pretty outfits. Again, I’m an idiot!!
I nap most days and still sleep easily at night.
I’ve received a letter from neuro today telling me the genome project has come back with a probably answer for my muscle problems. Atm I have a suggested diagnosis of a type of lgmd. I am 34 and have had issues since 23. Although looking back, I did struggle from teen years. I have no idea what’s the neuro has got to tell me so I am waiting with baited breath for an appt!! Also, I’ve always been told MD doesn’t cause pain but I think that’s bull! When I speak to those affected they often say it does. So I wonder if being exhausted is a similar phenomenon. No specific reason, just part of it?!April 2, 2019 at 12:28 pm #176740Reply To: Pain from falls
Not sure who told you that MD does not bring pain, but I suspect they have no understanding of it. Many varieties of MD give paon and many folk with MD do not suffer pain. So you can be one of the unlucky ones like me who have pain. For me it is all over my body part from the right side of my face. Not necessarily all caused by MD but most of it. Please remember that each of us experiences MD in different ways, so you cannot predict whether you will or will not get pain or whether it will bad or barely noticeable. If you do get it you will quickly find out how and when.
Night time breathing can be a problem and thankfully you have had that examined, but waking up frequently may be a result of pain or discomfort in your joints, but whatever the cause waking a lot during the night is not helpful. It is always worth looking at why you wake up and what can be done about it. The oft quoted old mattress may be a problem, or it may be the mattress or pillows are not right for you. Like everything we do when we play this game with our MD it is always worthwhile looking at what is going on and keeping notes, mentally or physically, so you have an understanding of what is happening in your body. But Cat’s advice about depression and fatigue is important. I doubt that there is anyone with MD who have not had depression at some point, and the nasty thing it is it can creep up on you without you noticing it. If you have the slightest suspicion that depression may be the cause of some of your problems please do talk to someone before it gets bad. It is so much easier to deal with. As for fatigue, if you are feeling tired, maybe, just maybe you are doing too much mentally or physically, and looking at what is going on in your life might pay dividends. But may I say in all seriousness you are not an idiot for wearing pretty outfits, you are normal. You want to wear them to make yourself feel good, you do not wear them because you wear the brace then it will make you feel worse. Again , as Cat said, you will know when you are ready for your sticks and your brace and whatever else is thrown at you, and then you can wear your pretty outfits, and use a stick and thumb your nose at the world if they do not like what they see.
MD will take you many places with many forks in the road. You choose which fork to go down, you are in charge.
PS Have you had any help from OT at home?
So many love songs, so little love.April 2, 2019 at 7:54 pm #176759Reply To: Pain from falls
Thank you for your message again. It helps to know I’m not alone! I have been through a fair amount of searching for help and solutions…. was supposed to have OT visit. It didn’t happen, even after chasing. Someone I work with today told me I didn’t look like I had a disability so I guess that describes how ‘not disabled’ I appear- has anyone else experienced this pain and weakness in ways that you manage to hide before it progresses? I’ve been doing it for A decade. Hence why I feel a fraud.
I have a 18 month old very expensive mattress after testing and trialling! I spent a fortune on pillows also. As for mental health, I’ve been on Paroxetine for depression for many years and have been through several rounds of therapy- CBt, DBt and pain management. I’ve also taken most pain killers including those that also aid sleep. I’ve had amitryptiline and also morphine patches when all else failed. My mental health varies but I am always tired! Last year I lost weight and wasn’t swimming gently a few times a week- that was after a period of two years on heavy pain relief struggling to function. Now I’m back to not having energy to go swimming. It’s this fluctuation which confuses me. But I think Its a lack of pacing myself And overdoing it. I don’t think my muscles get better, just my overall health.April 2, 2019 at 8:49 pm #176761Reply To: Pain from falls
When you had your sleep study, do you remember if you had CO2 as well as O2 saturation monitored?
And I echo what everyone is saying about pain and MD!
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adamssar78ModeratorPosts: 2,246Joined: 05/03/2015April 2, 2019 at 9:03 pm #176762Reply To: Pain from falls
I can’t remember what they measured but I was being checked for sleep so apnoea. Yes, pain is real but in a way it’s nice to know now I’m not alone/ although I’m sorry for you to have to suffer pain!!April 2, 2019 at 9:11 pm #176763Reply To: Pain from falls
The reason I ask is because morning headaches can be associated with a build up of CO2 overnight. The tests for sleep apnoea are sometimes different and CO2 levels can go unmonitored.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adamssar78ModeratorPosts: 2,246Joined: 05/03/2015April 3, 2019 at 12:22 pm #176781Reply To: Pain from falls
It sounds like you are doing all the right things, but wading through treacle to get any where. Do chase up the OT, daily if you have to do. You can self refer. If they will not come out remind them that once referred they have a duty of care, if they fail to come to see you remind them that they are failing in that duty. I have had to do this many times (not with OT though) and it often helps to remove any log jams there may be.
Clearly pain is a major factor for you, as indeed it has been for me. Like you I have tired every pain med under the sun, and tried mixing combinations and working to find something that will work. Not everything will work for everybody, and because of their complex interactions you might want to see the pain clinic for advice and guidance. Initially the best they could offer me was counselling, having been a counsellor for some twenty odd years it seemed a little futile, but eventually I managed to see the consultant who put me on cannabis (Sativex). Despite the foul and I do mean foul, taste it has worked wonders for my pain. That may not work for you, but somewhere out there is a combination that will and they can help you find it. For me now pain, what there is that remains, is a fact of life and I cannot remember being pain free. As such I accept it and deal with it as best I can, knowing what will make it worse or better. Yes I take risks with it from time to time, mostly out of necessity and I recognise that I will suffer in the days to come. But that is my choice. I am in control.
Your other issue of tiredness is obviously a factor with ME as well as MD, but being made worse with poor sleep. I would totally support what others have said about this and possibly suggest it is time to revisit the sleep clinic for further advice, and look again at the things mentioned above. Perhaps in the interim consider how much ventilation you have in your bedroom. Poor ventilation means reduced oxygen intake, not good especially if you are not breathing properly. Is your door wide open, have you tried a fan, have you got the window open slightly? Little things can make a difference there and give you a starter for ten as it were.
I must say that you should not ever , ever have to justify yourself to anyone about your condition and your pain. The comments you mentioned that a colleague had indicated you did not look disabled I have faced many times, not least of which from our refuse collection people who were refusing to conduct my assisted collection as I did not look disabled. when I asked their boss for a copy of their medical degree and evidence of post graduate neurological training the problem went away. We should not ever have to do this, but currently our society believes we should be questioned.
So many love songs, so little love.
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