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Old 07-16-2010, 12:49 AM   #1
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Advice

Hi all

I'm doing something I've never done before asking medical advice on the site

I'm experiencing emense pain in my shoulders in arms everyday.

I don't want to go do dr because they will just tell me it's MD and prescribe pain killers etc etc etc

My left leg sometimes goes numb that makes it hard for me to get up at all and I'm starting to walk much slower and with so much more effort.

Is this normal part of MD and will this go away?

Not panicking here just want to know if this the normal part of MD I'm going to go through

Mandy

 
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Old 07-16-2010, 03:23 PM   #2
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Re: Advice

Mandy,

I do sometimes get indirect pain from my limb-girdle MD. I believe that the pain is often a result of the lack of muscle supporting, surrounding and cushioning my joints, organs, nerves, etc. Most often I get sciatic nerve pain in the back of my leg. This happens when sitting, most often in a car. But I also experience my leg or legs "falling asleep". Again, I contribute this to the lack of cushion and support because my muscles are thin and shrinking. My neck and shoulders often ache if I'm using my arms over my head, almost like a pinched nerve.

I believe that my MD doesn't hurt but there is often a lot of aches and discomfort. I don't know if this answers your question at all but it's been my experience. Hope you feel better soon.

Mark

 
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Old 07-17-2010, 03:28 AM   #3
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Re: Advice

Quote:
Originally Posted by michigani View Post
Mandy,

I do sometimes get indirect pain from my limb-girdle MD. I believe that the pain is often a result of the lack of muscle supporting, surrounding and cushioning my joints, organs, nerves, etc. Most often I get sciatic nerve pain in the back of my leg. This happens when sitting, most often in a car. But I also experience my leg or legs "falling asleep". Again, I contribute this to the lack of cushion and support because my muscles are thin and shrinking. My neck and shoulders often ache if I'm using my arms over my head, almost like a pinched nerve.

I believe that my MD doesn't hurt but there is often a lot of aches and discomfort. I don't know if this answers your question at all but it's been my experience. Hope you feel better soon.

Mark

 
Old 07-17-2010, 03:37 AM   #4
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Re: Advice

Thanx Mark

I just a bit worried that I'm losing more muscle power and that I'm starting my next "downhill".

I suppose that is whats expected but being as stuborn as I am I don't want to completely lose my independance that I'm kinda feel is going to happen

I'm relying enough on my kids to help me and when I lose arm and leg power I'm in big s...t. My ex will jump in and then it's going to be a battle between him and me re the kids.

I just to make sure what lies before me so I can prepare for the battle...

He isn't that nasty but he wants the boys to live with him and put me in my moms house where I can get "decent" help but that's never going to happen while I'm still alive

I know he is all talk but sometimes I never know. The boys will not leave my anyway.

I'm going through some kind of "worry" stage that is so not me.

 
Old 07-17-2010, 09:30 AM   #5
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Re: Advice

Hey Mandy,

Worrying about the unknown future is definitely part of having MD. I understand THAT part completely!!!

 
Old 07-20-2010, 11:49 AM   #6
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Re: Advice

Hey Mandy,

I get the same aches and pains that are indirectly caused by my MD. I have tendonitis in both shoulders (left more than right), and my scapulas are sore most of the time. I have winging of my shoulder blades which makes me look UGLY! My PT said to expect the tendonitis to be there for the rest of my life, and consider it chronic pain, and just deal with it. He is a good friend of mine, and helps me relieve it with ultrasound and massage quite often.

It probably would not hurt for you to go to your Dr and ask for a referral to a PT, they can often help relieve a lot of those little "pains".

Speaking of the future, I hate thinking about it, I have been doing really well with living in the present lately, but sometimes something minor happens that makes me worry again. Yesterday we went out for lunch with my inlaws. When we were done I went to use the rest room. The door to the handicap stall was really tight and the only way to close it all the way would be to push from the outside. I decided that since it was tight, and you would be able to see my feet below the stall it would be OK not to lock it. When I was done and getting ready to wash my hands, a lady comes barging into the bathroom and straight through the door into me. She could really embarrassed and ran out again closing the door all the way from the outside on her way. I was stuck in the bathroom! Luckily after about ten minutes my mother in law came in to use the rest room, and I recognized her feet, and I asked her to let me out. She had to use all her strength to get the door opened for me.

I kind of laughed it off then, but it hurts every time something stupid like that happens, and I wonder what is coming next. My husband was really worried that I might have fallen in there because it took so long.

Enough of my self pity, my advise would be to go to the Dr and ask for a PT referral.

P
P

 
Old 07-21-2010, 01:09 AM   #7
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Re: Advice

I went to the dr and he said I should prepare myself to be confined to a wheelchair because of the pressure I put on my body while walking and picking up heavy things with my arms

I stand quite a few minutes sometimes an hour while cooking and my back is so painfull that even sitting down hurts. I use a warm water bag so ease the pain.

I bought a new office chair to see if this will help but the back pain is getting worse. The arch in my back is becoming severe that my whole upper body is leaning backwards.

My legs is becomming so weak that the way I used to get up is getting harder day by day. I hope that the cold weather contributes to this as it's been so cold the past 2 weeks.

Hopefully when summer arrives this will help to warm up the muscles properly that the pain eases.

I had my left scapula fused to my breast bone a few years ago to look more "normal" to my husband at the time and this caused that my left arms is extremely weak with basically muscle waste from my hand upwards to my shoulders.

The operation was a major flop but from behind (except for the scar) it looks much better. I cannot lift this arm properly at all.

I had a fairy tatooed on my right scapula where the wings lift up if I move my shoulder (big tatoo) I feel that this makes me less concious of how it looks.

I don't understand why I'm starting to feel a bit depressed about my situation as I've deallt with this with a positive attitute all my life.

I'm scared to be alone at home and carry my cell with me wherever I move to in the house even to the bathroom. I'm becomming paranoid about this now.

I've had this for 19 years and now all of a sudden I'm having these "feelings" of helplesness.

I'm getting angry at myself for feeling this way and when my family makes jokes like they've done all the years I'm starting to get angry with them. I used to laught with but things are changing

Do you think my change of mind is because I'm not prepared for the future?

 
Old 07-21-2010, 08:39 AM   #8
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Re: Advice

My back has been hurting lately while I'm working in the kitchen. I love to cook, always have. But I can't balance anymore so I find myself leaning forward with my hips against the counter but my shoulders and back leaning backwards so I don't fall face first into the sink! I've tried to stand "normal" but I just can't balance that way. With my new method, my back aches terribly after 10 minutes. This is depressing.

Fortunately and somehow, I have fought off the depression. Maybe I'm just not as prone to it as some and for this I am blessed. (I am sure any shrink would tell me I'm in denial and that I'm REALLY screwed up)! I just live day-to-day. Thoughts of the future ARE depressing.

Hang in there!

 
Old 07-21-2010, 11:56 AM   #9
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Re: Advice

Mandy,

I wish there was something I could do for you to feel better, it does sound as if you are getting depressed. Depression can, at times, but just as disabling as MD is, I know that more than anyone. If you can't get a referral to a physical therapist, would you be able to get one to a psychologist and psychiatrist? I am not sure things work the same in SA, but here, the psychologist does the talk therapy and the psychiatrist prescribes medications. You may not need both, but I do think you would benefit from some kind of talk therapy. I have been on Antidepressants for over three years, and in therapy once a week for over two years, and I would not be without either. I still hit very low valleys at times, but they are now fewer and farther between. I still don't see a future, but I no longer have a constant desire for my life to end!

Some of the AD's have actually also helped me feel stronger, some of it is obviously because I feel better emotionally, but one of the ones I am on appeared to make me just a little bit stronger as well. It is called Pristiq, not sure of the name in SA and if it is available there, it is fairly new here in the US. If you cannot get the help you need there, there are a few foods and supplements that can help boost your mood just a little bit. Vitamin D, Fish Oils, and Vitamin E are all good to take, as are B12. Broccoli and eggs are good to eat. I could keep going.... They will not cure your depression, but my psychiatrist asked me to take them along with the cocktail, he is a DO so he prefers to prescribe as little as possible. Do you have a clergyman you can talk to if you can't get to a professional therapist?

Mark, denial is a good ship until you hit a hurricane ;-) I'm sure I threw that one at you before.

P

 
Old 07-22-2010, 12:48 AM   #10
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Re: Advice

Howzit

I got up this morning feeling better and don't really know why I felt like that

The last time I felt depressed was when I went throug my divorce and that pain was worse than the MD

I hate going to any kind of Dr even to discuss my feelings - hate it

I feel that talking to you guys is helping me to cope for whatever emotional hell I'm going through

SA has all the facilities available to me but I'm the one resisting all of the help I can get

I want to live my life "normal" and I do have the physical help I need at home. It is the unknown that scares me at the moment but I know I will get past this as soon as the next sytoms hit me and I know what to expect

I suppose the unknown is getting to me esp since I started reading about MD and symtoms and the one where they mention you eyes not closing properly when you sleep and the possible hearing problems is something I do not want to go through

I've had this MD for so long but I can still walk in the house and use my scooter when I leave the house so this is something I've accepted long ago and I hae no embarresment re this at all

I should stop reading all this crap re MD and ensure myself that I'm fine

I'm a strong person emotionally and this is just a hurdle I have to overcome and get my sense of humour back that helped me all these years

Thanx for the encouragement and believe me this all help!

M

 
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