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!!

@gaboslastresort Just the fact that you’re trying to exercise is great! We all had to start with small steps. When I got out of rehab, my biggest dream was to go outside for a walk!! But, I forgot that I was using a walker just to walk across the room. Slowly, my husband was able to get me walking.
With that in mind, you might want to join our walking group.
https://connect.mayoclinic.org/discussion/lets-go-walking-join-me-for-a-virtual-walking-support-group/
There are all kinds of walkers in the group. Some, like you, have to really work at walking and others go for miles, and some do exercises at home. So, come join us! We all walk ‘virtually’ and then compare how we’ve done.

It has now been a little over a year since your post and I hope that you have found some answers. I thought I would give you an update on myself in case it could be relevant to your situation.

My symptoms of muscle weakness and stiffening since my note to you had only worsened and my doctors were not able to get anywhere. By the fall I was beginning to very noticeably feel brain fog and an inability to think clearly, which was quite scary. It is quite a long story and I will try to be and be as concise as possible. Through research on neurodegenerative disease, quite miraculously, I kept noticing "glutamate" coming up. It is an amino acid found throughout your body in abundance, and is also one of the most predominant neurotransmitters in the brain. Many people are deficient in this who have gut issues, but after further research I learned that people who suffer from neurodegenerative disorders typically have elevated levels of this amino acid in their brain which can cause a problem with movement when not kept at a regulated level in proportion to other neurotransmitters. An article written by Dr. Vikki Peterson, who specializes in Celiac Disease, states in an article that people who suffer from Celiac and a neurological manifestation of Celiac, may also have a problem with dietary glutamate. Glutamate is found in all food, but especially processed food, and high protein foods such as beans, nuts, meats, dairy, also anything that is cooked for long periods or fermented like tomato sauce, bone broth etc. After trying a half a block of Parmesan cheese which has a particularly high level of glutamate, I noticed that my leg stiffness and weakness worsened terribly. After two weeks of giving up high glutamate foods my symptoms resolved. The day I didn't even know I could walk (well) I ran!! It has now been four months and I am feeling better than I have in years!! I am keeping a very careful diet and trying to vary things as much as possible, and keeping very careful proportions... But I am thriving. I do not eat anything processed except for an occasional rice cake and a little almond butter. It is not easy-- but I have my life back and can keep up with my kids.

This information on glutamate I think may may be something to consider for anyone who is suffering from any form of a neurodegenerative disorder-- from MS to autism and ADHD. It is very interesting and something is that many in the medical profession are not aware of. My doctors say that I'm a walking miracle.

I hope that you are feeling better and have found some answers! I don't know if this could be helpful but thought I should let you know in case it possibly could be.