1. < Autoimmune Diseases

Leg Weakness and Mobility Issues

Posted by gaboslastresort @gaboslastresort, Jun 29 5:31pm

Hi! I’m new here and am sharing my situation in hopes one of you have heard of something similar to what I'm going through. For reference, I’m a 23 year old female. Since mid-January, I have been experiencing symptoms in my legs including weakness down both legs, decreased range of motion, and lack of endurance which inhibits my ability to walk distances longer than a minute or stand for a couple minutes without getting fatigued/feeling like I just ran a marathon. As a result, I no longer drive. I also struggle getting down/up from the ground due to decreased range of motion/flexibility and can only go up the stairs one by one with my left leg leading and hold a rail going down one step at a time. These symptoms have significantly impacted my daily life.

Some background is I was having bad anxiety/consistent panic attacks in Dec/start of Jan. In mid January I did a Pilates workout targeting the legs (tons of squat variations including pulsing, calf raises, etc) and I instantly knew I overdid it when my legs were shaky and stairs were tough right after. It became extreme DOMS, I had a heavy sensation as if bricks were weighing my legs down, and even lightly pressing my legs hurt. Probably irrelevant but I also got a really bad cold around that time. It’s as if my body freaked out with everything and somehow turned the DOMS into weakness that never got better.

Since then, I have seen a neurologist, rheumatologist, orthopedic dr., musculoskeletal dr., and primary and urgent care. All are stumped and don’t know what’s going on, saying it’s an unusual presentation and weird I have no other symptoms.

I have had an MRI on my lumbar spine and brain which were both clean and rule out MS. My EMG/nerve conduction came back normal. I have gotten lots of blood drawn 4 different times and everything is in normal range. From my autoimmune blood panel, only my ANA was positive (abnormal), but my neurologist said women often are positive even though they don’t have autoimmune disease. Mine was a speckled pattern and titer was only 1:80.

Since mid-February, I have been going to physical therapy 1-2 times a week and have seen slow, small improvements, but still not close to where I was before all this.

Since I struggle with walking a normal pace/cannot walk far before my legs feel completely wiped out, I only average about 1,000 steps a day if even, and my legs (especially my right which is worse), have visible muscle atrophy.

Any thoughts/suspicions on what's going on? Could my symptoms simply be caused by lack of use and get better if I gradually start moving or have someone stretch my legs each day? Or is it some rare autoimmune disease that got triggered from the leg workout/bad anxiety I was dealing with in January? Or does it sounds more like a muscular condition? Thank you in advance, I just want my life back.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

gaboslastresort | @gaboslastresort | Jul 2 11:50pm
In reply to @thisoldewe "@gaboslastresort Yes it does "seem like an eternity". My heart goes out to you as you..." + (show)
@thisoldewe

@gaboslastresort
Yes it does "seem like an eternity". My heart goes out to you as you begin this journey into the unknown. This feels like climbing Mt Everest, when you are the least able to do so.
Continue to hunt down medical answers and treatments, but, I would say, more importantly, build a support system!
You are not alone;amazingly, you will discover who your true friends are. It is vital to have support.
Finding Connect is a brilliant step; here you will find others who understand !
All the best to you.

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Thank you! You are right, I should try to build a support system. I am someone who dislikes having to ask for help, but this has definitely been teaching me that it's okay to lean on others and the good people will want to help/expect nothing in return.

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1 reply
gaboslastresort | @gaboslastresort | Jul 2 11:59pm
In reply to @celia16 "I don’t know what caused my weak legs. Lots of medical professionals couldn’t figure it out….so….My..." + (show)
@celia16

I don’t know what caused my weak legs. Lots of medical professionals couldn’t figure it out….so….My instinct is that it was due to some inflammation in my body and lab test did confirm that. I gradually improved over a year without PT or a regular workout routine, but I might have gotten better sooner if I had gotten PT. I kept working, doing household work, shopping, etc. My social life was dismal, but my friends supported me. If it happened again, I’d follow medical advice and push for PT. Talk therapy has helped me a lot with other medical issues. That’s vital, imo. I also have anxiety snd that doesn’t help.

I can relate to the fear and frustration of having weak, sore and stiff leg muscles. It felt so bizarre. It made no sense….I was active and healthy before then! Yes, I had Type 1 diabetes, but it was in good management. My biggest frustration was I never got the idea the doctors fully understood the degree of sore, stiff and weak leg muscles I had. They were thinking a 4 (on a rating scale) and I was at a 94!

One doctor suggested that perhaps it was due to improper footwear! I knew she had no concept of what I was dealing with.

So, stay strong and please utilize all the resources you have to get the most input and treatment possible. I hope there is help on the horizon.

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Wow, I relate to how isolating it can feel and how no one (even doctors) truly understand how hard it is and how it affects your mental/emotional health so terribly. Often I feel like people around me don't really care since this isn't happening to them and think I'm fine because I still wear a smile. My next step is to see a neuromuscular doctor and also get my thoracic/cervical MRI just in case. So to be continued, until then I'll keep putting one foot in front of the other.

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gaboslastresort | @gaboslastresort | Jul 3 12:02am
In reply to @dlydailyhope "@gaboslastresort You may want to have a blood test to see if you had COVID which..." + (show)
@dlydailyhope

@gaboslastresort
You may want to have a blood test to see if you had COVID which may have triggered new symptoms for you.
https://www.mayoclinic.org/tests-procedures/covid-19-antibody-testing/about/pac-20489696
My brain and thoracic MRIs were clear but my lumbar and cervical are not. I would not assume that since your brain/lumbar MRIs were clear that your cervical spine is okay. If you have symptoms that tie to cervical spine neurology or orthopedic structure, you would want to get a MRI.

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Thank you! I will be scheduling my cervical/thoracic MRI just to be safe. I hate enduring all these tests but I suppose it's better to check than to always wonder.

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ukjanet | @ukjanet | Jul 3 12:18am
In reply to @gaboslastresort "Thank you for sharing! I'm so sorry you're dealing with this, you're not alone. I too..." + (show)
@gaboslastresort

Thank you for sharing! I'm so sorry you're dealing with this, you're not alone. I too have Googled everything, seen countless doctors, completed so many tests in hopes of receiving a diagnosis only to have normal/negative results back. Part of me wants something to come back positive, just so I can finally have an answer and figure out a treatment plan, but I'm also thankful tests are coming back negative.
About twitching, maybe a few times a day a part of my leg will twitch randomly for several seconds (almost always a part of my thigh) but nothing constant. Weakness/lack of endurance/no full range of motion with my legs are my main issues. I too can walk around the house a bit, but driving, walking at a normal pace/further than even around 100 steps at once is impossible. I'm in the United States. My rheumatologist is passing me on to a neuromuscular dr, so I guess that's my next step, though she said it's going to take months to get an appointment. In the meantime, I'll keep up with PT.
Curious have you also had to stop driving, lost a good amount of your social life, and can no longer really do the things you love? I'm not sure if you feel this way, but I'm constantly grieving my old life. I'm here for you! Keep me posted on any findings for yourself.

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Hi again. Thanks for coming back to me. I’m sorry to learn how much this
is affecting your social life. You’re far too young to have to deal with
this. I only drive short distances and this is because I sometimes have
such strange sensations in my legs I feel as if they could cramp at any
time and I’ll go in the back of somebody. As soon as I get into the
drivers seat I start to get anxious. I’m sure that this makes things a
whole lot worse. Do you find that you have more energy in the mornings. I
do. I start each day full of optimism but by early evening my legs start a
dull ache. It usually passes before I go to bed and I sleep well. Two
years ago it was found I had protein in my blood and I was diagnosed with
MGUS. (It’s a pre cancer of the bone marrow) I now have to have my bloods
done every few months. There is a chance that my symptoms could be due to
that (CIDP) although the neurologist says he’s absolutely sure it’s not.
Like you I miss my old self and spend ages looking at photos of when I was
‘normal’. It’s impossible to explain to people what the pain feels like
but it’s just as if I’m ploughing through mud. I get so exhausted that I’m
scared I won’t pick my feet up and I’ll end up falling over. That hasn’t
happened yet. Where are you in the States? I’m in Los Angeles right now
staying with family. I have another appointment with my neurologist in
August but I don’t expect any answers. Do you think it could be MS or
Myositis? They seem to tick all the boxes. Lots of people have had muscle
aches after the Covid vaccine so that’s another possibility. I’m going to
keep on walking and also exercising on the static bike to keep up muscle
tone. Keep up with your PT. I see a Chiropractor every week. I do
exercises for spinal stenosis. It can’t do any harm! Please write back.
We can help each other through this and we have to keep positive. A few of
the people who have replied did make a complete recovery. Take care xx

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1 reply
reets70 | @reets70 | Jul 3 6:38am
In reply to @gaboslastresort "Thank you for sharing! I wish I got tested for Covid back then, but I just..." + (show)
@gaboslastresort

Thank you for sharing! I wish I got tested for Covid back then, but I just figured it was a bad cold like usual since they always hit me hard. Yes, I try to keep up with PT, but it leaves me more sore/wiped out after for a couple days after, so it really is a delicate dance with not overdoing it but also trying to build strength back. It's ironic since a workout arguably set this all off, yet I'm working out to try to get better. I can do more reps/exercises than when I first got there, so I suppose it must be doing something, right?
That is amazing your son recovered but wild there was never a proper diagnosis. It truly is scary when the professionals can't even provide an explanation/have no answer. It's really hard for me to see everyone around me live their best life in their 20s and I'm just on the sidelines alone. I am constantly grieving my previous life but trying to tell myself I (hopefully) have 60 years ahead, and it has only been 6 months of this even though it feels like eternity. Time will tell.

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Have you been tested for Gullian Barre? It also is an auto immune illness and it sounds like your symptoms. Or what about Polymyalgia Rheumatica?

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1 reply
Christine | @thisoldewe | Jul 3 9:30am
In reply to @gaboslastresort "Thank you! You are right, I should try to build a support system. I am someone..." + (show)
@gaboslastresort

Thank you! You are right, I should try to build a support system. I am someone who dislikes having to ask for help, but this has definitely been teaching me that it's okay to lean on others and the good people will want to help/expect nothing in return.

Jump to this post

Oh so true! That is a pearl of wisdom!

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catartist | @catartist | Jul 3 10:01am
In reply to @thisoldewe "@gaboslastresort Yes it does "seem like an eternity". My heart goes out to you as you..." + (show)
@thisoldewe

@gaboslastresort
Yes it does "seem like an eternity". My heart goes out to you as you begin this journey into the unknown. This feels like climbing Mt Everest, when you are the least able to do so.
Continue to hunt down medical answers and treatments, but, I would say, more importantly, build a support system!
You are not alone;amazingly, you will discover who your true friends are. It is vital to have support.
Finding Connect is a brilliant step; here you will find others who understand !
All the best to you.

Jump to this post

I too am challenged in past 6 months with leg weakness and pain ( long had some). I have a muscle atrophy condition (RA and prednisone for 35 years). Lost 4 glute muscle and some shoulder ones. Anyone else have this. I PT and try moving as much as possible - fear of further damage I try to put aside - Dr.s can’t tell me what to expect. Anyone?

REPLY
2 replies
Christine | @thisoldewe | Jul 3 10:32am
In reply to @catartist "I too am challenged in past 6 months with leg weakness and pain ( long had..." + (show)
@catartist

I too am challenged in past 6 months with leg weakness and pain ( long had some). I have a muscle atrophy condition (RA and prednisone for 35 years). Lost 4 glute muscle and some shoulder ones. Anyone else have this. I PT and try moving as much as possible - fear of further damage I try to put aside - Dr.s can’t tell me what to expect. Anyone?

Jump to this post

@catartist
So glad you have a physiotherapist - hopefully they can advise you in the world of RA. we liv e in a backwards world, where we must move to keep muscle strength around our joints, with a condition that screams 'don't move!"
Your doctors are being truthful when they can't tell you what to expect. each person is unique, and just how much improvement or strength is an unknown that only you can discover.
Many years ago, after a serious accident, i was in physio; doing baby steps for a long while. After about two years, my doctor told me with a big smile, that they initially, had thought I had "had it!", and never had expected me to walk again!!!
So glad they kept that to themselves.
So keep on going, don't be limited, or discouraged.
Doing physio exercises can only help.

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catartist | @catartist | Jul 3 11:15am

Thank you for responding. It’s a day by day for sure.

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ginger3344 | @ginger3344 | Jul 3 12:56pm

Check out the sypmtoms of CIDP, mine sounds like what your going through. They feel that mine is an autoimmune reaction to the covid vaccine, they are reporting many cases now. UCLA nueromuscular docs are great, mine started 3 years ago after the first vaccine.

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