Leg Weakness and Mobility Issues

Oo ok yes my inflammation was normal/not high and family does not have anything autoimmune except my aunt with arthritis so it is puzzling. I relate to how it is a struggle doing basic things like getting up from a seat, the car, etc. It is very scary not knowing what is going on/causing this and what the future looks like for me, and of course frustrating since I cannot participate in the same things I used to be able to. It is hard seeing everyone on social media and friends/family live and I am just stuck on the sidelines. But yes, I can do more reps/exercises than when I first started PT in February, so it must be doing something. I will keep you posted on any findings.
May I ask how did you exactly get better? Did you just gradually workout more to get your strength back and it took a year? I'm scared to overdo it and be back at square one, but I wonder sometimes if not using my legs enough each day is making them atrophy more/weaker.

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.

@gaboslastresort
You may want to have a blood test to see if you had COVID which may have triggered new symptoms for you.

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.

In my situation, my first mono infection took over two years to completely recover from (and the initial, what I now know, were likely neurological Celiac symptoms that caused my first bout of paralysis ). During those two years, I would use a wheel chair intermittently after overdoing it. I had at that time tried PT but felt that it didn't make sense to continue because it wiped me out to quick... I was hitting a wall and using all energy that which left me nothing when I came home. So, I instead I gradually built myself up, standing and walking more and more, nap when I needed to, every day but sometimes overdid it and would have to nap more and use a wheelchair. To give you an example, I scheduled a nap for my wedding day; I danced once with my father and once with my husband but the day was obviously a big one... the following day I was back in a wheelchair. Very gradually I could walk more and my naps became fewer and fewer (granted I do believe I was dealing with both mono and Celiac symptoms). Eventually, after those two years, I returned to almost my normal, and could work hard and get back to being more active. During flare-ups of paralysis and nerve issues I would sometimes go for PT briefly but my flare-ups only lasted about a month... And though they weakened me, my personality (and children, whom I homeschool) keep me very busy. This past year, though I cannot walk for distances before hitting that wall, I do walk in my house a lot. I do not use my chair in my house. I can move my legs and have strength but if I try to say walk 100', I'll have to stop every 20 or so feet to let my legs recoup. (It had been every 5-10'... so I do think I am improving!) It is very strange. I am by nature very busy, which sometimes gets me into trouble, but in this case, my life demands I stay busy... And that is my PT. I focus on moving as much as possible and not sitting often, other than when I read to my kids during the day. I sleep seven/eight hours without a nap (though most flares initially wipe me out for a few weeks and require naps). Now, if I overdo it walking around and being too active, too tired and/or too stressed (which is also a big factor for me)..... My legs will lock up for days... And they cramp and hurt so terribly... And I get super tired. I am finding that since I have been gluten free I think that the amount of physical activity I can withstand before getting to that point is improving, and when I do get to that point, it seems that the length of time that I stay in that "locked up" phase is also improving. (?) I push my chair as often as I can even outside to (hopefully) build myself up as I had in the past. I go up and down stairs more frequently than I had been able to a few months ago (though I am careful not to if I'm feeling like I've pushed too much). As you said, it is a delicate dance!! I'm just choosing to continue this way rather than use PT because I know that at this point I can pace myself as I had in the past if I stay very intentional. Yesterday, I tried to do some ballet with my daughter, just gentle and purposeful movement... enough to feel my muscles but gently. I don't think I could have done that three months ago. So...... PT is a great thing if it is working for you. Moving and doing what you can and walking that fine line is difficult but seems very important. As a note about physicians and awareness of this: my specialists have been shocked by my Celiac diagnosis. My symptom presentation is not so common but with 50% of Celiacs not being properly diagnosed, and many completely asymptomatic it seems that more testing needs to happen!! My concern is that I am not sure how likely doctors will be to test for this without digestive issues or it running in your family (with possible insurance issues etc). If you feel you should be tested and your rheumatologist will not test you, keep going through your doctors to find someone who will. I am sorry for my length... Just trying to give you a better picture of my situation. I hope you find answers and feel better very soon!!

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.

@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.

@gaboslastresort
Did you get a full iron panel blood test done? Since you are a young female, it would be good to check if iron deficient/anemic. I had heavy periods and mostly vegetarian and my bloodwork didn’t flag anything until they did a special iron panel which showed I was iron deficient. This affected oxygen levels in my blood and I felt lethargic and weak.

Oh my goodness I feel for you. I have been searching on this site for somebody who shares my condition and your description of what has happened to you is virtually identical to my current situation. I have been slowly getting worse over the last 6 months but started having issues in October 2022. Do your leg muscles twitch? Mine started twitching after a bad cramp in my inner thigh which was excruciating. After that my legs began twitching almost constantly. Like you I can’t walk more than half a mile before my legs become exhausted. They seize up from the buttocks down. When I’m sitting watching tv or just tottering around the house I’m absolutely fine but as soon as I leave the house to go ‘walking’ within minutes I’m in pain. Like you have seen a neuro surgeon, had a full MRI on my back and seen a rheumatologist. Like you no explanation can be found. I’m 61 and before this was fit and healthy playing tennis 3 times a week. My life has changed dramatically and I’m desperate to find answers. I’ve Googled myself to death and had to see a therapist for anxiety. I’m in the UK by the way, you?

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.

Hi there! Yes, I got ferritin, iron, iron saturation, CBC, etc checked multiple times over the past couple months and all are in normal range.