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Thread: I have a question about muscles!

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    Default I have a question about muscles!

    What to take and does anyone else have this. It feels as though i can feel all my muscles in my body. Sometimes it feels like they are creepy crawly and I have feel them tighten up and have to think real hard to get it to stop doing that. I also think that they are getting weaker I just don't have the strength to do the things I did a few months ago. My legs will start shaking and feel as though they are just going to give out. My hip and lower back is well just wow, well not working as it should and causes me a lot of pain. But mri's ex-rays and ct-scans show nothing other than some arthritis, slightly bulging disc, and a few other things but they say nothing that should be causing me the pain I am having. I have had epiderals, SI injections and nothing seems to be working for it. Does anyone else have these issues and problems and what do you do for it?

    I am just wondering if its my lupus or something else going on that no doctor seems to be able to find.

    Thank you for the help and replies, I am a newbie and I get scared of everything at this point that happens with my body. The smallest pain somewhere I am like oh no, what is going on now.

    Gretchyn

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    For me, just the necessary "slowing down" from all this stuff has been enough to make my muscles go weird on me. If you were active at all before, you will have issues with "muscle atrophy" as you slow down. I have to almost force myself to just get up and move and do my "core" exercises. I do have to skip the "bad" days, and not over-do things when I feel better. Do what you can for exercise... Similar symptoms also go with fibromyalgia. I've had EMGs, and other tests for symptoms similar to yours. That said, they've tried me on lyrica and a couple other similar meds, and though I don't like the effect, I'm pretty sure it'd just be a matter of finding a good balance with the docs' help. Other folks do have CNS issues from lupus.
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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    blackeight (08-20-2012)

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    What in the heck is CNS? I have never heard of that. And yeah I was active just a few months ago I could bench 120 lbs on the bowflex and was doing good now I have problems just moving clothes on the hanger in the closet. I used to go for 2 walks a day to the pool everyday with my kids, play with my pitts and now if I get 1 room clean and supper made I am doing good. This sucks I feel so lazy but hurt and my muscles feel so weird all the time and my hip omg my hip is killing me not to mention my back. I read somewhere the other day that lupus when it attacks joints usually the hip is the first one it goes for. I wasn't sure how accurate that was so thought I would get on here and see.

    Thanks!

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    CNS = Central Nervous System-- your brain and spinal cord.

    Sorry you're in pain. I can relate. I used to be a long-range hiker, and I've had to slow down a lot. This weekend, I did a pretty easy seven-mile hike and felt okay... Until the next day. Now, two days later, I'm still paying for it. It was still worth it, though. I can't completely give up what I love.

    I hope you find some balance, too...

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    blackeight (08-20-2012)

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    I totally understand, because I have issues with my muscles on a daily basis. The pain is in muscles, I didn't even know I had.
    Look for a pm.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    blackeight (08-20-2012)

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    The truth is that there is no "usual" with Lupus. It attacks us all differently which is one of the reason that it is so hard to diagnose. There are things that many people get but even those are not a guarantee. Be careful what and where you read on the internet. There is a bunch of bad info out there. (There is good info as well I am just saying be careful)
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

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    Yes, i have found that out the past 2 years. Which is why I am so glad that I found this site and such wonderful people. I can't tell you how thankful I am to have found you all. Thank you Mari

    Gretchyn

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    Derrie-7 mile hike! the last time I did that was when my truck broke down-and I live in Illinois where the land is mostly flat. I wouldn't want to try that in the mountains!

    Blackeight-I suffer from sore muscles and bones quite often-I bought a bowflex 2 years ago and find it quite helpfull as it is easily adjusted and its smooth flow is less jarring to my muscles.
    You mentioned pitts-How many? I have 2 Jake and Elwood -playing with them is quite the workout!

    I think this topic may be especially interesting to us men folk. I have always been big and strong-well not so strong any more!
    I rarely needed help with any thing,I still rarely ask for help(stupid pride) but struggle through on my own.
    My wife tries to help by cutting the grass etc before I get home from work but then I feel bad because she works too and its not fair for her to be doing so much.

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    Quote Originally Posted by n.mac View Post
    Derrie-7 mile hike! the last time I did that was when my truck broke down-and I live in Illinois where the land is mostly flat. I wouldn't want to try that in the mountains!
    You're right-- hiking in the mountains is pretty tough when your legs tend not to cooperate and hurt most of the time! But hiking is one of the great loves of my life, and I really push myself -- perhaps sometimes too hard -- to still do it occasionally. Now, 7 miles is the longest one I've done for over a year, and I broke it up into two parts (4 miles in the morning, a three-hour break, and then 3 miles in the later afternoon). I've had to spend a lot of time looking for hikes that don't have a lot of strenuous up-and-down (very hard to find in my neck of the woods). I use a set of two trek poles. I rest often (sadly, some people don't like to hike with me anymore because I'm so slow). And if I do go on a hike, I'll pay for it for days, so I choose the ones I do very deliberately.

    I had to give up overnight backpacking trips because of the way my symptoms flare up so predictably the few days after a hike. If I hiked in to a wilderness area and spent the night, I wouldn't be able to hike out the next day! That's been hard for me to accept, and I'm trying to figure out how I could somehow have an overnight backwoods experience again.

    Also, I'm really scared my leg problems will eventually progress, so I'm pushing myself a bit to get as much hiking joy as I can, so I can have a reserve to tap into if the day ever comes when I can't hike the backwoods of the Rockies anymore.

    (Sorry for the ramble and thread hi-jacking-- this physical limitation issue gets me all kinds of agitated!)

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    I went from being flat out and quite physical to not being able to hold a cup of coffee in a matter of three weeks. Left arm now five yrs later is still weak and weaker than the right. I have spent four yrs doing exercises with the past year not doing any exercises in particular. I found that the exercises felt like they were making my arm weaker. I also had my left top leg do the same. I also woke up one day and all the muscles had collapsed in my right shoulder and the whole shoulder had dropped. I was looked at for MS and cNS central nervous cystem. Both not confirmed. I get twitching of my left hand. I have been put on a Parkinson's drug Madapor ..... Dopermine and that helps and all gets much worse if I miss drug. I can't offer any solution, but I have had to get used to it. I have found that my left leg will just give up on me and drag and collapse so I use a walking stick for longer walks and especially when working with others around where I have to weave in between people.

    Doing all the core exercises didn't do anything for me but after getting stable with plaquenil I did find t hasn't got any worse and my core strength has got much better. Also my overall stamanar has got much better again without exercise vet just enjoying life.

    You do need to see a neurologist and keep note of loss of strength and any twitching or trembles, and burning and numbness etc. I personally just put it down to Lupus ... Until I am told otherwise by Drs. But the Drs do need to keep a watch on these things I have been told by my Dr.

    Hope this helps and you don't feel so alone. Lupus is different for all of us. Keep your chin up!
    Desley
    For every dark cloud there is a silver lining!
    Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;

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