Legs not working!

[Kaerick]

Hello fellow PMR friends! Has anyone experienced their legs not working?? I'm under a great deal of stress at work and working 9 hr days on my feet - also just filed for divorce and it's going to be a fight with my ex. I've had PMr since August - currently on 10 mg of Pred - decided I may stay on this a while since I'm going they a stressful time. My body seems to be shutting down - today I could barely walk! Extreme weakness in my legs like I could collapse at any moment. Any advice or suggestions?? I have a lot on my plate right now and everyday is a challenge - I'm also extremely emotional and have been in tears several times the last few days at work - not good. Thanks for your advice - I so appreciate you all!

[Soraya_PMR]

Sounds to me like you’ve unbalanced your pred:PMR scales by loading up with a lot of stress and too much activity.

What was your start dose of pred? When did you drop to 10mg? Could be you’ve gone too low, too fast.

That’s what my legs did when I dropped from 15 to 12.5 under rheumie instructions. I got stuck on stairs. Resolved it by upping my pred.

I think you need to see your GP to discuss. Your head and body aren’t in a good place right now, and you may need signing off from work. Go and let him/her see what state you are in, and let it all out, cry if you have to, that usually makes them act! Take a friend or relative for support if needed. Good luck.

[Kaerick in reply to Soraya_PMR]

Hello thank you for the advice.... I started on 15 mg August 21 - bumped up to 20 a week later and started to taper down per Dr advice beginning of Sept. I've been on 10 mg since Nov 1.... Lots of stress right now - today was better as my legs worked!

[Soraya_PMR in reply to Kaerick]

Too speedy reduction I think.

[Grants148]

Hello Kaerick,so sorry that you are having what sounds like a horrendous time of stress,PMR is very likely to flare up more in stressful situations ,and having to stand for so long during the day will not be helping your legs,no wonder you are tearful and emotional ,who would not be in your situation.l can only say that l sincerely hope and pray that everything will work out for you without too much hassle regarding your divorce and that the coming new year will be a much happier one for you.xx

[Kaerick in reply to Grants148]

Thank you for your kind words and prayers - yes 2018 will be a great year - I'm hoping ....

[SheffieldJane]

Oh poor you Kaerick! One of those dreadful times in life when everything hits you at once! It's the absolute pits! I have been there, if you weren't crying you could almost laugh at the cruelty of it all.

I expect work feels that it is an absolute necessity because of finances too. Is there nothing you and work can do to ease the burden while you are going through all this and are clearly ill? Redesign your job? Reduce your hours? Take some leave? Go sick?

I think you may have to up your dose from 10 mgs, it's not doing the trick is it? PMR flares up during stress. The difficulty in walking is something I had when the inflammation wasn't under control. There is little point in taking too small a dose.

Do you have friends and family to talk to during this time?

I would try to avoid getting into any direct conflict with your ex. It is compelling to do so, but the stress is just killing. Try to keep it cool and professional. Work through an intermediary if you can.

Being unable to carry the weight of what you are going through is clearly illustrated by the way your symptoms are manifesting. Something has to give, don't let it be your health and well being. Let us know how you get on.

[Kaerick in reply to SheffieldJane]

Thank you so much for the kind words.... I soo appreciate this forum and all of the support. I think I'll up my dose for the next month since the stress will not be going away with all that I'm dealing with. My boss does not understand what I'm going through physically because I look fine on the outside. I work retail so am told I will start working 6 day workweeks in Dec. I'm not sure how I'll manage except to call out sick if I need to. I do have a few friends I can talk to ... day by day right now that's for sure.

[1Purplecrow]

Hi Kaerick. Ah Yes, the feeling of trying to walk around in cement boots. I wish I had magic answers for you...but alas, I do not...😟

All I have is good energy to send you, so for this moment, trust the wind beneath your wings...and know you are going to be ok.

Kind regards, Jerri

[Kaerick in reply to 1Purplecrow]

I feel your energy thank you for that! This too shall pass - I know ..... thank you

[PMRpro Ambassador]

I never really understand how people with PMR manage to work at all (I couldn't have got in for a 10am start, never mind any earlier!) and absolutely not if they have to stand.

The pred won't help the emotional bit and the fatigue of PMR won't help the weakness. Are you in the UK? It should be covered by disability legislation if you are so your employer should make some adaptations for you. Have you got an occupational health department?

If you haven't seen it, have a read of this:

healthunlocked.com/pmrgcauk......

And think very hard about where you are. You may need some time off sick and maybe a bit more pred.

[Kaerick in reply to PMRpro]

Thank you for the advice ..... I'm in the USA. Think I'll up my pred for a bit and call out sick when I need to - going to have to start working 6 day work weeks in December -going to be a tough month! I work retail.... . I wish I could afford to take some time off but financially I can't so day by day I deal.

[Hidden in reply to Kaerick]

It's difficult being caught between a rock and a hard place financially with a long trrm illiness never mind all the emotional and personal.issues going on. You may have to decide to take a few days/weeks off now rather than end up having to take months off. I had a few health issues and pushed myself to work. Was offered part time but felt I couldn't afford that. Eventually I had to stop work.Hoping I would eventually get back into workplace. 11 years later and three more autoimmune issues on I have had to accept that full time work impossible and part time improbable. Perhaps if I had been a bit kinder to myself earlier I would be ok. I have just had to manage financially. I now try to live within my means. A new concept for me when i adopted it.

I hope you feel a bit better soon and survive December in one peice with working legs.

[Kaerick in reply to Hidden]

Thank you for your well wishes - sounds like you too had a tough time .... just taking it day by day and trying to rest when I can / have a great day!

[powerwalk]

I've had very severe issues with my legs - when I was taken off the pred recently by the Consultant - I had severe leg pains and my legs would literally not carry me up the stairs. It was very scary and when I was put bck on the pred - it improved immensely. I fear for when I'm taken off the red again - it was more scary than the fact that my arms were appalling and I couldn't even dry myself properly after a shower. It is a minefleld as I sid before all this. (I was told that my leg pain was from the fibromyalgia - if this is the case - why did it respond so quickly to the prednisone - which fibro is not meant to do!). I hope you feel better soon and wish you the very best. I hope all that stress gets sorted as its really not good. I too work fulltime and its really getting to me now - I don't know how much longer I can do it - the fatigue is just appalling.

[PMRpro Ambassador in reply to powerwalk]

If it responded to pred - it was NOT due to fibromyalgia, End of.

I'd be seeking another consultant...

[powerwalk in reply to PMRpro]

thank you. Really weary of it all - sometimes the whole thing just get you down. Most of the time I plod along but every so often it just really gets me down. Like a lot of people I would suspect. Thank you.

[Rosedail]

Hi: Yes. I had severe leg pain...my legs would give out going upstairs or crouching down (thus the kitty litter incident I've joked about in the past.) While much better on prednisone I continued to have stiff and sore legs and moved slowly and held on to a railing for 3 years. Now that my PMR is gone or almost gone my leg pain is gone with it! Yey!

I did work through my PMR as well, but I feel so sorry that you have to work six days a week. Please give yourself the gift of cutting back on all other obligations. Have serious talks with close friends and family and ask for support during these times. I asked that they would not give me gifts if things during the holidays but rather give me gifts of assistance where possible. Massages? House cleaning anyone😂? Also, I explained to my friends that I had to really cut back on all social obligations.

[Kaerick in reply to Rosedail]

Thank you for your kind words of advice .... I appreciate 😀

[tangocharlie]

I've always had leg pain with PMR, my legs are so weak and I've lost all muscle strength so it's a great effort to walk unless I'm on a dose of 5 pred or higher. I recently read a description of myositis, another auto immune illness which is also responsive to steroids and I'm wondering if I've got a bit of that too.

[PMRpro Ambassador in reply to tangocharlie]

Did they ever check your CPK levels? (Creatine phosphokinase) It is raised in polymyositis, not in PMR.

[tangocharlie in reply to PMRpro]

Thank you, I'll ask at the next rheumy appointment.