Leg Weakness and Mobility Issues

@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.

Iam 76 yrs old and sounds just like what iam feeling,Weakness started a few yrs ago,and steadily getting worse every day! I've been to all the same Dr s as u. All say Inflanation ,Auto amouine disease ,Shjgrems ,is what was found . All my muscle hurt and decreased mobility. It's horrible at my age . I feel for u so young. Iam a non stop person all my life . Standing ,all day working hairdresser . Now it hard to walk a few blocks. Dont know what else ,I push myself every day to try to keep moving as much as possible.

Prednisone long term can cause steroid myopathy but I would urge you to consider other possibilities. A muscle biopsy may be the only way to be sure. I have been on prednisone for over 30 years and my Drs never considered any other cause for my muscle weakness and atrophy until I became wheelchair dependent and insisted we look further. I was on placquenil over 25 years as well. A muscle biopsy at Mayo Clinic showed neuromuscular toxicity from the Placquenil!
After stopping the drug and not improving, I was then diagnosed with CIDP, a form of Guillain Barre Syndrome mentioned previously. All the while all my Drs urged me to reduce my prednisone, which was the opposite I needed for my RA, SLE and CIDP. They made me feel guilty for taking it, but it was the only thing keeping me going. So it’s never simple and one must have facts, not assumptions of what is going on. Good luck.

So good to hear from someone experiencing like symptoms! Tho’ I am so sorry! RA itself does this myopathy/ atrophy - much worse with daily steroid ! No one really spelled it out till I actually started loosing muscles (2 glutes on each side are empty fatty tissues now - useless) only max left, also in arm and shoulders some loss. No one suggested a biopsy - not sure they think it’ll help any at this point. I haven’t given up but feel Drs may have. How has new info helped you? ( I took plaquenal for a while years ago but not now. Orencia probiotic, methotrexate, and Cymbalta for pain and handling it, tramadol more recently. I lost so much weight that I am eating very intentionally- protein, minerals, calories, bit B12 and such. The exercising is helping balance a bit but exhausting- hope you can get improvement! THAT is the question - what to do and expect?? Thank you for sharing

One of the many tests I have undergone in hopes of a diagnosis is EMG and nerve conduction (which would diagnose Guillan Barre among other things) but results were normal. I have also undergone imaging tests like MRI of lumbar and brain, and those were clean. Inflammation markers like sedimentation rate and C reactive protein are not elevated, so polymyalgia rheumatica doesn't seem likely either. Strange how all tests are showing normal, but based on my symptoms I'd think something would show up as off in them.

Hi! That's great you're still trying to drive a bit, I understand the anxiety that comes with it. I haven't attempted driving since January when this weakness for me began because I'm anxious I'll get in an accident due to how quickly my legs give out strength/endurance wise. I miss it and want to try, but if I can't do it I'll be really discouraged since it used to be so easy for me.
I am very stiff first thing in the morning, but I suppose my leg energy is at its peak then the more I use them throughout the day they get more tired and I need to not overuse them.
I am also in California! In Orange County, so not too far from LA. My rheum said myositis isn't likely since my bloodwork for inflammation, creatine kinease protein, etc is totally normal. And EMG/nerve conduction was normal. I have no lesions on lumbar/brain, so MS was ruled out too. I just scheduled a cervical/thoracic MRI next month just to check no lesions there either. My rheum recommended I find a neuromuscular doctor, but those she knows are booked until fall which is so far away.
Yes, I am going to keep up with PT because I have slowly been able to do more reps/more exercises since I started back in February, so it must be doing something. I may try to slowly increase my steps each day too to see if that does anything for my endurance, which is the thing I want to get back to normal the most. I hope you find some help through your Chiro and static bike! I have considered Chiro but am nervous it'll tweak something weird. I tried acupuncture/cupping three times the other month but it sort of made things worse so I stopped.

Did they diagnose you with CIDP? If so, curious what tests did you undergo to get that diagnosis. I have already done so many tests like imaging MRIs, tons of bloodwork, emg/nerve conduction, and all is normal as if I have nothing wrong.
I need to schedule an appointment for neuromuscular, likely through UCI, but they are booked until fall which is so far away.

Yes CIDP and most likely from the Covid Vaccine! UCLA nueromuscular is fast and great! They are honest about the fact that they see a lot more of it. Mine started a few days after the Vaccine , i started falling down and lost strength in my left knee, which would just give out and Down I went... It started in my left leg and they thought it was a spine problem . After fusing S-1
L-5 and L-4 and L-3 it just got worse over the next few months. At first local (Ventura CA.) docs thought it was GBS and started me on IVIG which helped some < 44 infusions for 4 hours each) Dr. Trikamji. put me on the rituxan (rituximub) and I am able to walk now with a cane.

I had symptoms of CIDP for years and had normal EMGS x 3. It wasn’t until the 4th EMG that nerve damage showed up. A spinal tap sometimes shows high protein but not always. There are special autoantibodies against myelin and other nerve cell proteins that may be done on serum but only the neuromuscular specialists order those. You need a NM specialist who will take a stand based on your signs and symptoms even if all tests are normal. That is what is meant by a “clinical “ diagnosis and someone who has seen it enough times won’t require proof. I wish everyone going through this luck and strength.

I was diagnosed by EMG/nerve conduction test plus a spinal tap is required. Spinal tap gave me a severe migraine.