January 14, 2016 at 1:09 pm #120241PLEASE READ: Muscle PAIN
The decrepitude associated with my MD I am currently experiencing (intense difficulty simply getting up from a chair, climbing a flight of stairs, showering, heavy sensation in my legs/ like I can hardly lift them after walking only a short distance) has rendered me in a difficult situation I also have some academic questions in relation to my neuromuscular condition such as why am I in constant physical pain like my muscles are on fire or someone has poured acid onto them whenever I exert myself? To clarify when I say exert myself I don’t mean through intense physical exercise just simply going about my affairs, shopping, cleaning and other domestic banalities. Furthermore, I find it highly emasculating and soul destroying form an alpha male perspective that due to my genetic makeup I am unable to simply strengthen my muscles through weightlifting and become healthy and I appreciate true strength does not come from a physical capacity, but an indomitable will. But frankly my resolve to simply continue to valiantly fight this condition is waning and would argue I need some kind of support.
I would earnestly appreciate any comments, advice, guidance or information on my situation.January 14, 2016 at 1:54 pm #120248Reply To: PLEASE READ: Muscle PAIN
MD can offer help in several areas. We have Care Advisors who can help with access to medical people, therapists, grants and equipment, we also have Ambassadors, who are people who can listen and help advise you about general day to day life. There are numerous publications free to download coveting many topics and aspects. Links to these things can feel found on the main page under the heading Get The Right Care & Support
Yes the absolute hardest thing to do with MD is to mentally adjust and accept, whatever stage we are at with our condition, we all struggle with this one.
Pain is incredibly debilitating, sadly often those who moan and return to their GP get better treatment.
Have you been diagnosed with a specific type?
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.comAMParticipantPosts: 4,751Joined: 05/03/2015January 16, 2016 at 2:52 pm #120279Reply To: PLEASE READ: Muscle PAIN
Just a congenital myopathy., unknown type. I don’t understand why I’m in constant muscle pain, bar the scoliosis spinal fusion I underwent 18 months ago. Simply just walking a short distance causes my legs to ache and feel like acid is being poured onto them – I hope that doesn’t sound too melodramatic. Also, my legs feel heavy and am worried this is a prelude to the introduction to a wheelchair. Any advice/comments on this situation would be greatly appreciated.
FlynnJanuary 16, 2016 at 4:59 pm #120281Reply To: PLEASE READ: Muscle PAIN
It isn’t being melodramatic, that’s a good way to describe it. I wish I could remember the explanation but I’d be wary about getting my facts wrong. I’ll have a look to see if there are any factsheets.
I think congenital myopathy includes a large spectrum of symptoms. As AMG said, contacting a care adviser is a good start, often they provide a pathway to getting the support you might need which sadly is not always the case with GPs.
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: 05/03/2015January 17, 2016 at 1:18 pm #120287Reply To: PLEASE READ: Muscle PAIN
Thank you for the insightful comments and information sheet. The problem with this putrid condition is it is so variable. I know others with the condition who are a lot fitter than myself. I seldom have the energy to simply walk my dog to the mail box, without experiencing intense discomfort pain and fatigue and feel pathetic. I am incapacitated by the illness and unable to undertake gainful employment and am reliant on social security and feel like a bum because I cannot provide for my family. I sometimes think I’d be better off dead. Despite this I am however, at college with the ambition of undertaking a degree at some stage, but my commitment comes and goes. What’s the point of erudition if simply won’t lead to a prolific career if I’m too sick to pursue one?
From a cardiac and respiratory perspective I am stable and not in any palpable danger so I should be happy, but the physical decrepitude has me in emotional turmoil.
If anyone could help me I’d appreciate it.
FlynnJanuary 17, 2016 at 1:52 pm #120288Reply To: PLEASE READ: Muscle PAIN
Thanks your brave posts. Sorry you are having such a
It will get on top of you at times. Sadly many on our
forum will understand how you feel. No easy answers I am
afraid or we all would have taken them years ago.
Often people come up with a range of “coping strategies” to
make the best of a bad situation. My Care Advisor back in
2010 came up with her “Alternate Day Strategy”, simply to
have a days rest inbetween days of activity. To never arrange
appointments on consecutive days. To have less full days
inbetween full days. It has worked! Really put it into practice.
The best strategy I have come up with in my own is to listen
and “take on board” the advice of the O.T.’s , the Physiotherapists
and the Care Advisors. Between then they have changed my life over
the last few years. I worked from home for many years. So many things
are possible on the internet these days. Maybe that degree you mention.
Thanks for sharing. There are always will be difficult times. Keep
chatting to us. We hope we can help.
"Even if you are not paranoid, it does not mean they are not out to get you!".taungfoxParticipantPosts: 4,630Joined: 27/09/2010January 17, 2016 at 2:17 pm #120289Reply To: PLEASE READ: Muscle PAIN
Thank you, Fox. However, I’m not brave. I moan and complain rather than get on with the rest of my life. Frankly, I don’t have a care advisor, physiotherapist or anyone who can offer any real support bar this forum.
There are able-bodied people with little to get depressed about, yet alone a progressive neuromuscular condition which presents one with significant disability. I’ve read about individuals who spend their life engulfed in melancholia. Yet, I dare say I have a legitimate reason to be depressed, but I feel worse when I know others with far more severe forms of MD get on with their life’s and are pretty happy despite their severe disability. I feel like a failure to be honest because I cannot handle my minor situation in comparison to say someone with Duchene.
If anyone can offer any further guidance or simply a kind word I’d be eternally grateful.
FlynnJanuary 18, 2016 at 12:28 pm #120305Reply To: PLEASE READ: Muscle PAIN
Your story seems similar to mine. I also have an unspecifyable myopathy, and I also feel this “lactic acid burn” (as I call it) when walking the stairs or drying my hair with a towel. I walk around the house, but more than 100 metres will cause great heaviness and fatigue in my legs, and my gait becomes irregular. Apart from this I also get muscle fatigue/pain when chewing, writing, and generally holding up my head. All this has deteriorated badly in the last year.
I have discovered that doing too much will cause constant muscle pain, especially in the evenings. Reducing my level of physical activity made me nearly pain-free. That obviously leaves me with the big problem of keeping as fit as possible, and so I try to exercise at a level that is below the pain-threshold. Have you tried this?
You say you are very fatigued. This enormous tiredness and general fatigue is also very familiar to me. It is not strange that you feel depressed when this goes on for a long time. I have learned that exhaustion will make you feel unable to deal with life, and therefore desperate. Please realize exhaustion and desperation are closely connected! So for me making sure I don’t get exhausted also keeps depression at bay. Fox’s idea about being active on alternate days really helped me!
Not being able to work is also very frustrating for me too. Still wrestling with that one I’m afraid… I am often so tired that my whole brain fogs over, and I can’t get it to do anything remotely complex. At the same time I’m craving some intellectual action
By the way: I don’t think you need a reason to be depressed. It just happens… And regardless of the causes something can be done about it. If it is there all day every day it may be time to ask for some help. Dealing with this alone makes it so much harder!
genistagenistaParticipantPosts: 14Joined: 14/10/2014January 18, 2016 at 4:52 pm #120339Reply To: PLEASE READ: Muscle PAIN
The lack of intellectual stimulation is why I have undertaken a couple of courses at the local college. It provides me the opportunity to converse and socialise with others and give my brain some exercise and hopefully at the end of the day I walk away with a recognised qualification to add to my blossoming CV.
I never really excelled in high school due to constant absenteeism, (MD Related) but was not due to lack of academic ability. So, I decided to retake a number of GCSEs at night school and attained good grades and noticed an improvement in my confidence.
Thanks for sharing.
FlynnJanuary 18, 2016 at 6:17 pm #120359Reply To: PLEASE READ: Muscle PAIN
Yeah that is great, but still there is the frustration of not being able to do something with your competencies…
I was trained as a classical singer/singing teacher, but I can’t perform or teach because I’m not able to make reliable appointments, and because I can’t work for more than an hour a day. For my intellectual stimulation I sing while accompanying myself on the piano. And I (slowly) read non-fiction books. Also I’ve recently started some creative writing. I’m hoping that will give me more of a sense of “output” as opposed to just “input”.
genistagenistaParticipantPosts: 14Joined: 14/10/2014January 19, 2016 at 2:08 pm #120757Reply To: PLEASE READ: Muscle PAIN
I find myself languishing about the house and am frankly bored senseless. I try and undertake constructive endeavours, but at the moment have little to occupy my time bar revision for my upcoming exams, but that is supposed to pass the time not fill it. All I have to show for my existence and erudition are a couple of A Levels, GCSEs and a diploma in law and business. Yet, others with far more disabling forms of MD have surpassed me. Does anyone else suffer from chronic fatigue as this is the reason I’m not at University or pursuing gainful employment and it is my understanding patients with DMD are not affected by this?????
There are so many things I long to do, but due to this putrid neuromuscular condition robs me of them. I hope reincarnation is true and I get a better deal next time around, but as an Atheist guess that’s just wishful thinking.
Just frustrated as per usual and I guess this forum gives me the opportunity to post and channel this aggression in a constructive way I guess.
Thanks for listening guys. If anyone can help me wit this, I’m all ears.
January 19, 2016 at 2:42 pm #120760Reply To: PLEASE READ: Muscle PAIN
Best of luck with your up coming exams. You’re doing better then me, I keep thinking about doing an online course (cannot get to a college) but my motivation is lacking, because there is no reason to do the course I lack the mental resolve to get on and do one.
Sadly it is the nature of this disease to slowly rob us of life skills, we can but adapt and manage to our best. Try not to compare your situation with others, the disease is unique to the individual, and each individual is unique within the human race.
This dang chilly weather does little to help either.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.comAMParticipantPosts: 4,751Joined: 05/03/2015March 1, 2016 at 8:06 pm #124922Reply To: PLEASE READ: Muscle PAIN
Not sure if I should be resurrecting this thread, i hope I can. I can relate to all the thoughts expressed above. As mycondition worsens so does my pain (and my self belief ). I have no access to any hejpp whatsoever apart form the absolutely amazing peple at the neuromuscular Centre in Winsfor, without whom I would have given up years ago. Local physios could give me some elaflets, local OT’s could give lots of advice but can provide no practical help, the neaurologist discharged me saying there was nothing he could do and the pain clinic said there was nothign they could do but talk about it. Chocolate fire gaurd comes to mind.
A combination of paracetemol, tegretol, Tramadol and MST are now no longer making the grade and my pain is becoming unbearable esepcially at night. Has anyone any bright ideas as to what might be useful to try – anything would be considered other than a visit to a witch doctor as they are currently all out of eyet of newt and toe of frog.
I am fortunate in a way as I am now wuite old and with the body failing I shold not need to put up with it for too long, but I would like to msake that time easier. I have used heat to great effect and keep heat pads on my chair and in the car. Having a day off a week is a utopian ideal I am afraid. With seven chidlren, six grandchidlren and being the main carer for my 90 year old father (who cannot get help because he has only one major illness), one on one off will never work.
I am going to try accupuncture and maybe, just maybe, hypnotherapy. has anyone any experience of these at all?
I am also told that there is a combined pain killer and anti depressive med available, but I susoect that will make me even more sleepy that I am now.
So magic wand time please. What is the miracle cure for pain with MD?
So many love songs, so little love.March 5, 2016 at 4:32 pm #125247Reply To: PLEASE READ: Muscle PAIN
just wanted to add to this- sounds exactly like me! ive been told I have a genetic myopathy and more investigation is happening but it’s been a long wait so far.i study so I can achieve something but the brain fog is the worst part of the condition, it’s like cfs/m.e. on top of a muscle disease, according to my GP but until neuro knows what the md is then they can’t explain the fatigue.ive had breathing checked when lying down and it’s ok but am pushing to get a sleep study of my breathing done because many inc Drs have told me it may all be down to a short burst of apnea overnight due to respiratory muscle. so the carbon dioxide builds up and one gets sleepy. who knows. it’s been like it ten years for me! I thought I’d never work again but recently took part time work. it’s exhausting and I’m often off ill but I feel less depressed. I also had burning pain esp in my thighs for years. I was on so many painkillers. (amitriptyline was great but left me sleepier!) but…. I get less pain now. and was never explained to begin with- neuro always told me it didn’t fit with MD. others on here have disagreed with that! I think it’s got better because I naturally do less, I accepted I was mildly disabled and began the pacing as in one day busier than the next, and also perhaps the muscle is a bit more, I don’t know, dead now? again- who knows. I still walk and chase about after kids. I’m just slower and a bit wobbly and sometimes walk like a pirate! try to take each day as it comes. I know it’s hard to do that. if in doubt, sleep more and be kind to yourself! what are you studying? pippapippaParticipantPosts: 126Joined: 02/01/2012March 6, 2016 at 1:07 pm #125253Reply To: PLEASE READ: Muscle PAIN
It is interseting what you have said about fatigue and breathing. frankly I have given up trying to look for help in the medical field and I have been consistently told to look on the internet for answer by anyone who has been ‘treating’ me. Thankfully I have somewhat of a medical background so I do have more of an understanding. What surprised me was having had a chest x-ray, I was told my right lung was no longer working as the diaphragm was in teh same place as on an x-ray done many years earlier. I had a phrenic hemi paresis brought on possibly by a car accident. With my intercostals failing as well from MD it was clear to me then why I was struggling to breathe. However, i was again consistently told by the medical proffession that I could easily manage on one lung. I do wish that was the case.
However, may I say how proud I am of you for not only caring fro children as you do but also taking on a part time job. It is inspirational for all of us who are stricken with MD. With regard to the oain in your thighs, which I too have with a vengeance, may I get you to look at this video
Apparently using a tennis ball instsead can give you great relief from these pains. I am just about to start these exercises myslef, if I can buy a tennis ball somehwere.
PS How can you be kind to yourself with kids? Six of mine have left home and I only have one left now, but they all seem to want part of me every day.
So many love songs, so little love.April 30, 2018 at 12:34 am #156273Reply To: PLEASE READ: Muscle PAIN
Hi my name is chantel for one year or more I’ve been having very bad muscle pain kind of like flu pain but times 1000 it’s very painful and I have had many painkillers but sometimes it works a little buy taking the edge of but most times it don’t do nothing I’m hoping someone goes through simaler pain so I can get help I need help I feel like I have no option but to live with this pain!chan111222xxxParticipantPosts: 0Joined: 30/04/2018April 14, 2019 at 6:19 pm #177126Reply To: PLEASE READ: Muscle PAIN
In reply to your feeling inadequate because others seem to be living a more productive life while dealing with these issues, I often feel the same until I remember that most people if given the choice will stress the positive and endeavor to put the best light on their lives and accomplishments. Believe me there are dark times in even the most seemingly upbeat biographies. I think all of us would be better served if a more complete picture of what our lives are like were presented, the good, bad and the heartbreaking. There are many broken marriages, economic disasters, mental breakdowns and depressive episodes among our population but rarely do our fellows summon the nerve and will to pen this side of their stories. Hang in there, you are not alone.RedBig4214ParticipantPosts: 0Joined: 14/04/2019
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