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Leg Weakness and Mobility Issues
Autoimmune Diseases | Last Active: Sep 12 10:22am | Replies (101)Comment receiving replies
Hi! I’m a 23F. 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. Everyone has overdone it before, but it typically always resolves itself. For me, 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 my lack of use and get better if I gradually start moving more 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.
Replies to "Hi! I’m a 23F. Since mid-January, I have been experiencing symptoms in my legs including weakness..."
I developed some of the same symptoms about 4 months ago. I am 76 and have been fighting chronic pain for 8 years. These are new and puzzling. I just ran across an article regarding CIMP. or Chronic Inflammatory Myeliting(?) Polyneuropathy. May just be grasping at straws but worth a look.
Hello, a lot of what you are describing is what happened to me after I started working out on a treadmill. It was a tightness in my legs making stairs and walking in general difficult. A year and a half later I am dealing with the same mobility issues due to my diagnosis of a very rare autoimmune disease called eosinophilic fascitis. Only 300 cases recorded. Because it is so RARE there are not a lot of studies done to say what is the best treatment. My RA Dr had me on Prednisone for a while until my diagnosis then took me off of steroids and put me on Methotrexate. I am still not very flexible and having same mobility issues. At this point I am a mystery and waiting to see if an increase in medication will help me! It has been a long road. I may go into remission within a couple years so for now I keep on keeping on. No choice! I am 63 and still work full time. I plan on retiring next year. Just learning to adjust and taking vacation and sick time when I can. Relaxing is key and heating pad a daily thing!
sounds very similar to my inability to walk more than a dozen steps. I get terrible calf cramps at time. When my legs quit working they let me know I'm not doing well and send me the pain and burning so bad I cannot take even one step more.
I recommend you have your vascular system tested related to blood flow. I got PAD after my hip surgery last year (2024) and it is steadily worsening. Blood vessels are shrinking in my legs. But think you should have your vessels tested since you are so young. They test and compare both legs too. I was told it was claudication (sp) of my blood vessels by having too much plaque inside.
I am the exact same way. 67 and trying to cope with it for 1 1/2 years. Doctor after doctor and a lot of out of pocket. Stretching seems to be best. Walking makes it worse. I am hoping a mineral imbalance is part of it. Currently drinking Redmond Salt Sule water for 2 weeks now. I immediately felt a difference in one day. Tonight I am giving up magnesium I take at night and use only this. I hurt today so I believe the supplements at night are too much and no longer needed.
Life changing and loss of freedom is draining.
How are you at this time?
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Sorry to read your post. These "Mystery illnesses" have a whole different level of concern for you. And we in our modern world expect to find answers: as @celia16 says, there sometimes just aren't.
But we must not be complacent. Well done you, for hunting down various disciplines in trying to sort out this scenario.
The one thing that jumps out is that "really bad cold". Have you had a Covid test. I believe at this point a blood test may be the only way to determine if you have had Covid. Perhaps another manifestation of "long-covid"?
The wonderful thing that you point out is this: "slow, small improvements". Yea, we want those symptoms to be gone, yesterday. But consistent, positive changes in the right direction is pure gold. You may already have found the key to eventually getting back to yourself.
Our own experience with this was my son, when 15, became very ill, a "mystery". At one point was diagnosis with a brain tumour wrapped around the hypothalamus"... with just a few months to live. ..... ! There was no tumour.
The final medical answer was: "we may never know what was wrong. but he is making very small gains. We hope this continues". His recovery took 3 years.
Today he is a tall, handsome 46 year old - and his mom's joy.
I so wish for you the same future. You are to be encouraged to hunt for answers and treatments. If you are in the States, why not go to a Mayo Clinic? Use every possible advantage to find answers.
Remember that for all the amazing advances in our medical 'modern' world, we have discovered so much more that remains to be discovered. Stick with your physio and celebrate each new improvement, no matter how small.
All the best. Let us know how your journey progresses.