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06/26/2009 01:32 AM

Aching week arms and legs

Katiestar
Katiestar  
Posts: 5
Member

Hi everyone, I have only just been diagnosed with a connective tissue disease and i am wondering if its connected with my aching week arms and legs, Its so bad i cant even brush my hair without supporting my arm and going up stairs hurts so much i feel like iv climbed a mountain, I'm waiting for more tests to see if the connective tissue disease is marfan syndrome, If anyone has similar problems please let me know I'm really scared Sad Thank you, Katie.
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07/14/2009 01:03 AM
P0lly
P0llyPosts: 26
Member

Hi Katie, I am new here. I have Marfan Syndrome and am suffering with my arms and legs too. Sad

I have just been to see a rheumatologist who couldn't come up with anything conclusive so he is sending me to the Neurophysiology Dept. at a different hospital, which is next month, where they will do more tests

I find it difficult to explain my pains but my arms and legs feel very achy, heavy, like they have been wrung out and shaky. There are no visible signs that they are shaking but that is what they feel like on the inside. When my legs are at their worse i have to lie down, propping my legs up with cushions helps and placing hot water bottles under my thighs and calves too.

Don't know if that helps any, it wil be interesting to see if anyone else has anything similar.

Polly


07/19/2009 03:25 PM
Wolfecub
Posts: 10
New Member

I don't have the aching arms or legs symptoms - least not yet. Hope it somehting I don't have to look forward too. I tire easily and if I over-exert myself I have aching arms/legs.. but in a general thing - no I haven't gotten that part yet.

07/20/2009 08:09 AM
P0lly
P0llyPosts: 26
Member

This strange aching that I and Katiestar have does seem to be quite rare. There is nothing to say that having Marfan you will necessarily get all the symptoms so try not to worry. It seems Katiestar and I are special!!! Wink

Tiredness is one big factor though, as are sore joints, try to stop when your body tells you too and have a rest. Some days you will find you can do more than others, eg yesterday I had to go to bed for the afternoon yet today I am 'fine' and up and about.

Polly Smile


07/20/2009 05:18 PM
Wolfecub
Posts: 10
New Member

Work kind of doesn't help in that factor for tiredness. Every day around 11am-2pm I'm drowsy and could easily just go to sleep. Because I'm at work during those times, I am stuck behind a desk and can't do anything about it.

08/07/2009 05:18 AM
jackie1979
jackie1979  
Posts: 302
Group Leader
I'm an Advocate

I too tend to get tired at well and sometomes just want to sleep all the time particularly mid morning but try to push through it, not easy when stuck behind a desk which has been adapted and in a busy call centre but I do my best, I have been lucky that I have a supportive work place that supports me as best it can

09/01/2009 07:46 AM
tootall2drink
tootall2drink  
Posts: 17
Member

I am lucky per say, I don't work, not able too with restrictions and anxiety/depression. But at times I so wish I could get out and work and be with people. Hang in there Jackie with work. I get my tired time about 11ish after I have been up for about 6 hours. Some days I can push through and others I just give in and sleep. In a good but sobbering way it is nice to know we aren't alone and others do feel like me.

09/04/2009 05:01 AM
jackie1979
jackie1979  
Posts: 302
Group Leader
I'm an Advocate

Sad I am not too good today due to the pain had a restless night but I am coping as best I can, here's to some pain free days soon

Post edited by: jackie1979, at: 09/04/2009 05:02 AM


09/04/2009 05:45 AM
tootall2drink
tootall2drink  
Posts: 17
Member

Hang in there Jackie. We are blessed with those days of no pain.

09/26/2009 02:27 AM
P0lly
P0llyPosts: 26
Member

Hi everyone, I thought I would update you all on he outcome of the tests I have had for my aching arms and leg muscles.

My appointment went ok, saw the main man this time. He has checked all the test results and said everything looked fine. He gave me a thorough prodding, poking and flexing and has concluded that it is just the Marfan giving jip. As well as the co-codomol I take daily and the meloxicam I take as and when he has put me on Tramadol and Amitriptyline. The Amitriptyline I only take at night one at first then two after a week and hopefully I should be able to knock those off after 4 weeks. Although my joints are sore as normal it is the muscle pain that has been getting to me so these tablets should help with that. He is also going to arrange some physio which should help. I go back to see him in 6 months. I had some more bloods taken to check for possible vit D deficiency. My new lot of tablets both cause drowsiness so not much hope for keeping me awake during the day now, just managed to roll out of bed at 8.15 this morning!!

Hope you all have a great weekend what ever you are up to.

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