November 14, 2020 at 6:52 pm #190880Heart
Hello all! Looks like I’m shielding again, despite the gov not calling is this. I am in the extremely vulnerable category. I think its because my type of md often comes with heart and lung issues although mine hasn’t affected me in the way. Yet. Neuro so I wouldn’t be on the list. But I am. Im going with it.
Anyway, wondered if anyone as any insight into to heart and lung issue with lgmd 2i? Or any other md. Recently I had my review in Southampton and saw the physio specialist nurse, not the Dr. She said I didn’t need a heart or lung check yet as had a sleep study last year through gp referral, due to apnoa type symptoms. Ll came back normal- no apnoa. However. I still suffer morning headaches, extreme fatigue, nightmares etc. Also, I get palpitations. But she said the type of heart failure with 2i doesn’t cause this. The NHS website says it does. I am going with her view as she is a specialist. The one thing that does seem to be a but weird is that I often feel as though there’s something making it harder for me to breathe. But its like an allergy type breathlessness. So I’m guessing its not heart related. A bit worse atm and I feel weak thigh muscles and a bit shaky. I’m still walking and present quite normal apart from waddling and struggling with stairs! I now nap at least once a day. Hard going with work. That’s why its good to shield! I can sleep!November 15, 2020 at 12:55 pm #190893Reply To: Heart
So sorry to hear that you are having such troubles, specially that understanding of them from your supporters does not seem to reconcile with your own view of matters. May I offer the thought that although our conditions are often identified by us showing the ‘normal’ symptoms for them, I learnt long ago that with humans. and medical problems there never should be a ‘normal’ set of symptoms as w are all individuals with our own individual human system. I would keep pressing until someone, somewhere, can tell you why your breathing is getting worse, not just say we haven’t found anything wrong. They have not checked your whole body, so there may be something that was missed. You sleep study was a year ago. If a week is a long time in politics, then what is a year in the life of your body?
The information here https://www.musculardystrophyuk.org/about-muscle-wasting-conditions/limb-girdle-muscular-dystrophy/limb-girdle-muscular-dystrophy-2i-lgmd2i-factsheet/ clearly says that heart and lungs can be involved, so it is something you must be very aware of. Whilst I have no personal experience of LMGD as I have FHSD. The info tells me that lung problems are not a normal for FHSD, except in rare cases. So now I know I am rare as the intercostals have failed on both side, as well as the diaphragm on one side. All this gave me the breathing problems you also identify, and I am now progressing onto BIPAP, which is making a difference. The point of the takle is that whilst you may have the symptoms of LGMD you may also be unique in having other things go wrong too. There appears to significant changes happening, go back and keep asking why, things do seem to have changed.
Also oe quick question. How is your posture. If that is changing markedly then that may well impact on your ability to breathe. Have a look jin the mirror and see what you think.
So many love songs, so little love.November 15, 2020 at 1:30 pm #190894Reply To: Heart
Thank you. This reflects what I feel deep down. Yet, I also worry that I make a fuss about the symptoms I read about and they think I’m bonkers and don’t have the symptoms! In what way do people notice their breathing changes as they develop issues?November 15, 2020 at 1:36 pm #190895Reply To: Heart
Thank you. This reflects what I feel deep down. Yet, I also worry that I make a fuss about the symptoms I read about and they think I’m bonkers and don’t have the symptoms! In what way do people notice their breathing changes as they develop issues? My posture is getting a hit worse but not massively so. Also, its the second sleep study I’ve had that has shown nothing- both of which I requested do I feel a little dramatic now! Yet I also see that in over a decade of a condition worsening, thats not asking alot.November 16, 2020 at 1:26 pm #190928Reply To: Heart
NEVER feel dramatic about your body Too often, in my experience, has serious problems been ignored because of either the patient’s “I will manage, its nothing really” approach to a professionals “It must be a virus” type of approach.Nothing was wrong with me until my son was diagnosed, and then much fell into place. Hindsight is wonderful. For example , nothing was wrong with me until I had a serious car accident. An x ray was taken and they discovered one part of my diaphragm was not working. Whilst I was managing, it did explain why I could not do many of the things I used to to. Another example too if I may. My brother is slowly, but accelerating, losing strength in his legs and arms. With my history of FHSD I urged him to have a test. He lives in the US, so a simple blood test should not be a problem. Yet his doctor firmly proclaimed he could not have the condition despite never seeing it before. He continues to have increasing muscle weakness. It may be old age, it may be other things, if may be FHSD. You will learn as you progress through your MD life that being persistent, and continuing to ask why, will help you immensely. You are not asking for the earth, you are asking for an explanation. Now it may be that an explanation cannot be given as whatever a person has may not have ever been documented, or like with others they do not conform to the norms of a particular condition. It may be the person has something else wrong with them at the same time. Yes that can happen too. With a human body many things are possible.So always consider asking the question of someone who tells you that it is not xxxx. Ask why? If it is not xxxx then what is it? I always took the belief that to tell a patient they have not got a condition, but not explain the reason , would leave them feeling demoralised. I suspect we have all been there to some extent. Might I also suggest you try and understand some basic anatomy and physiology. Nothing too detailed, but an understanding of the vessel in which we live and how it works, especially within the MD framework.
However, back to the heart. As I mentioned above I had not noticed one lung not working. Now as time is passing and the other is failing I have noticed a difference. Almost everything I do has become increasingly hard, even allowing for the MD. Simply walking down the drive to my car leaves me breathless. Little changes that become cumulative. that is why I am such a fan of the diary. These small changes may be nothing at the time, but they will accumulate and you will begin to see the difference yourself. It then becomes evidence to a competent clinician and not just opinion. You have notice how your posture is changing. That can have an effect on your breathing. Breathing studies are normally performed lying down (with sleep studies it is well nigh essential). But have you have breathing test stood up, with your now normal posture? It may show a different story. You have indicated that your posture has not changed too much. Another little tale if I may.I thought the same too. I am good with my posture, some round shoulders of course, not much to be concerned about. Then I started watching myself in our security cameras. That gave me a different perspective.
Sorry for taking up so much of your time, but just let me finish with some thoughts of my own as to how you should proceed. Don’t take the answers you are given as gospel, ask for a second opinion if you are not happy. Ask for an explanation of what is happening.If the person cannot give you and adequate explanation, then you can have no confidence in their opinion that all is well. Seek help from a physiotherapist who can advise on your posture and try to prevent it getting worse. Make sure you are given specific help and support from them going forward. If that is not offered, again go somewhere else. Get copies of your heart and lung tests, so you ca make comparisons yourself. Were they done in a proper Lung Function department or just with a quick blow in an expirometer? The type of testing is important. I guess with the sleep studies your were remotely wired up to a transducer for a night. What was said about those results to you in detail? A copy of the letter to your GP will help summarise that for you. Keep a diary, especially of things you do each day, like walking to the shops or cleaning. It will help you identify specific changes. above all contiune to believe in yourself and what you are experiencing. If it is not right and “normal” for you, then it is not right and “normal”. If it is not right for you then ask for help to make it right.
So many love songs, so little love.November 16, 2020 at 8:39 pm #190946Reply To: Heart
Hello all. I have LGMD2L. It is quite rare for this type to have problems with heart function although they diagnosed me with left ventricular dysfunction. Which I think means the left heart muscle is not working as best it can. My neurologist said it was hard to tell if it was related to the MD. I have a strong history of heart disease in my family. My Dads dad and brother both died in early 30s from heart problems and my dad has had 3 heart attacks. It does get quite frustrating not getting answers for things and it’s difficult to stop thinking about things in case something has been missed. I wandered if anyone knew if over doing things makes your muscle function worsen quicker? Hope everyone is well, EmilyNovember 16, 2020 at 10:33 pm #190947Reply To: Heart
I can only echo what embayweather said – keep on asking. The morning headaches, fatigue and disturbing dreams suggest to me something isn’t quite right with blood has exchange. Do you remember whether CO2 was measured during your sleep study? Also, did you manage to sleep ok when you were rigged up for the study?
Do you find it gets harder to breathe when you are lying down?
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas AdamsNovember 16, 2020 at 10:36 pm #190948Reply To: Heart
I’ll look into that question about muscle function. I’d hesitate to give you an answer myself but there maybe some guidance or info out there from health professionals.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas AdamsNovember 17, 2020 at 11:48 am #190976Reply To: Heart
I’ve just come across this publication about exercise:
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas AdamsNovember 17, 2020 at 12:27 pm #190977Reply To: Heart
Hi Mike, thank you so much for always coming back to me so fully. I do agree with you very much and I know if it was someone else I would tell them the same. I think, often, I just need to hear it from someone else and Im sorry that is often you because I feel bad taking you’re time and energy up on my trivial concerns! I am very grateful though. I know my posture is worse. I can see it, albeit mildly. I also have a painful bone at the back of the neck which Im told is due to posture. I seem to feel breathless at random points, often if walking, but also when sat down. Not so much lying down. I have emailed my GP today asking to be checked for anaemia as it occurred to me that this could be ruled out first before I ask Neuro again. I am not feeling at all well today- headache, exhausted. Just one of those things. The tests I had were not done in a lung function department. I know what you mean as I used to take my mum (who had COPD) for them. I will request this. Also, Sarah- thank you so much for your info too. It is a huge support to hear you taking me seriously! I think my CO2 was measured in my sleep study, but Im not 100%. I will find out. It seems so like how people describe night time breathing issues. I do sleep very badly, also, and often wake feeling vaguely sick. Sarah, I slept well in the study.
And, hi to Emily! I am sorry to hear you are having a worrying time. I know I feel like my muscles hurt (like the acid type burn from over exercise) when I used to be more active. Now Im less able to be that active I get less of that. Stands to reason it made me a bit worse a bit quicker if my muscles couldnt heal….but Im not sure of the science of that. Just keep asking questions- of anyone on here, and drs!
Thanks again everyone…..PipNovember 17, 2020 at 1:26 pm #190980Reply To: Heart
This is brilliant thank you it’s really nice talking to people in similar situations. As we all know a lot of people don’t really understand much about these diseases. I started with a new physio last week and they are great! But never heard of LGMD which seems quite common. Having problems with my knee. She said that it is most likely coming from weakness from the hip and she said that before I told her about the MD. does this problem sound familiar to anyone?November 19, 2020 at 12:46 pm #191052Reply To: Heart
Pips, never, ever feel that your problems are trivial. I came across this many times in my previous life in the NHS, and found that some of them turned out not to be. We are all happy to help along the way if we can.
So many love songs, so little love.November 19, 2020 at 7:55 pm #191059Reply To: Heart
My ankle, foot and knee issues is from weakening pelvic and hip control.
With regards your question on over exercising and increasing muscle fatigue or wasting. In my case this is said to be true but then again not doing any exercise or periods of forced incapacity is also detrimental. Its all about achieving balance. And very individual. If you find that the pay back recovery after exercising is lasting then best to reduce.
"""""""What doesn't kill you makes you stronger""""""November 19, 2020 at 8:27 pm #191061Reply To: Heart
Hi Cat. Many thanks for your reply. I have noticed the muscle fatigue is getting worse and it takes me a lot longer to recover. I was back at the physio today for a follow up with the knee and she said my hamstring is weak and the knee is still painful after a month. In your experience would something like this recover with the right exercises? I’m just getting concerned as my job is very active and I don’t want to over do things if it’s going to make me worse quicker. I have been off work the last two weeks due to a death in the family and haven’t been doing very much and my legs have been very uncomfortable and stiff so it’s just goes to show that finding the balance is key.
I’m really sorry I just feel like I come on here and moan i feel like my body is worsening and it’s getting me down a bitNovember 19, 2020 at 9:54 pm #191063Reply To: Heart
Gentle exercise and stretches both with physio and independent could be beneficial to promote and maintain good range of movement. After an injury what wants to be prevented is further stiffening of joint or shortening of tendons.
Might be useful to know level of inflammation which can be detected with a scan physio can do.
Ive had good results in past with magnetic ultrasound (forget real name) to break up bruising and swelling in tendon angle injury.
If your finding it harder to get excersing as winter comes in. Ask physio about prescribing a Teraband routine you can do at home. Terabands are big elastic bands you can do resistance stretches with. I do this on average twice a day. Just while watching tv. Eg. Loop band around foot and push away from body to stretch leg muscles.
And never feel your moaning. Forum is here for you 🙂. Its all a learning curve and together we are stronger. Problem shared and all that 😎. We wont always have the right answers but always around to share.
"""""""What doesn't kill you makes you stronger""""""November 21, 2020 at 5:03 pm #191111Reply To: Heart
Hi everyone I haven’t been on here for a while, just wondering as I have opmd,the problem I’m having is doing tasks that that involve bending to pick things up. These tasks will take on average 5 minutes but when I stand up my legs shake like jelly. The next couple of days feels like I have done a workout muscles in upper legs very sore and stiff. Any tips or advice would be helpful. Hope everyone is keeping safe. JeanetteCrazy catParticipantPosts: 0Joined: 27/01/2019November 21, 2020 at 5:23 pm #191114Reply To: Heart
Hi Jeanette Welcome back to forum
Looking at workarounds is sometimes useful to avoid the painful pay back after an activity. I find grabber tools invaluable and have done since before I was wheelchair user full time. Dressing sticks with hooks can be handy for picking up, pulling washing out machine. pressing high switches or buttons. Washing baskets on wheels good to reduce lots of bending.
Do you have a particular task that needs brainstormed to reduce the need to bend? someone might have input with a gadget or suggestion.
"""""""What doesn't kill you makes you stronger""""""
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