Worried

[morrison]

Sorry for the late text. Went to bed around 10.30pm. Fine. Just got up to the loo. Fine. Then all muscle's just disappeared in my legs. I managed to get myself off the loo with the aid of my arms. And held onto everything to get back to bed. Frightened. I will wait to see how I am in the morning. Feel OK within myself, just no muscle control within my lower half. Anyone else experienced this?

[SheffieldJane]

How frightening for you Morrison. I am glad you are safely in bed. What do you think it was? Where are you in your PMR/ GCA journey?

I get dizzy getting out of bed, I think it's postural blood pressure. Ring the doctor to come to you if your legs feel weird tomorrow.

[morrison in reply to SheffieldJane]

Thank you. This happened in 2015 out of the blue. Comes from nowhere. Just really scary when it happens. I was worried then it might be MS. The brain is a funny thing, hopefully just a blip. By the way I am on 7mgs of pred. Stuck there. Thank you for your concern. X

[SheffieldJane in reply to morrison]

We are both stuck at 7 mgs then. I thought my symptoms were MS before diagnosis my lovely grandma had it. She was cheerful and passionately interested in people and life until she died. I now have some concept of what it must have been like. She never complained, I do nothing but moan some days. Let us know what this symptoms turns out to be.

[morrison in reply to SheffieldJane]

Thank you. Going to try and sleep now and with luck my legs will be back in the morning. Thanks you. X

[SheffieldJane]

Sweet dreams!

[morrison in reply to SheffieldJane]

Thank you SJ. Wonder what DL and PMR PRO will make of it.

[SheffieldJane]

I guess they'll see your post and tell you. It is an unusual symptom that you've had once before. Did the doctor's have a theory then?

Don't do a me and lie there catastrophising and not sleeping. If you feel well there is nothing to do tonight. Are you on your own?

[morrison in reply to SheffieldJane]

Yes with a lovely dog and a cat. Husband couldn't stand the symptoms of pmr. Married 37 years. A violent marriage. But wonderful 3 children and now 3 grandsons. But nothing beats a cuddle at night. Xx what about you SJ. X

[SheffieldJane in reply to morrison]

Do you mean he left you because of PMR?

I am married with 2 daughters and a son and 3 grandsons and a granddaughter. No pets since Rosie our rescue dog had to be put down with cancer.

Tolerating a violent marriage would be just the sort of stress that would lead to an illness like PMR. And women do for so many different reasons. I do hope that you are in a safe environment now morrison.

[morrison in reply to SheffieldJane]

Yes I am, he was found guilty last April with GBH and assault. Don't get this wrong I am a responsible adult. Was a school photographer for 25 years. Before that a PA for a major Co. Abd before that an air Stewardess for a major airline. So there is my life on a line. X

[SheffieldJane in reply to morrison]

I am not sitting in judgement, quite the reverse well done for putting an end to a toxic situation, it is an extremely brave thing to do, very, very hard. So great respect and a hug going out to you.

The latter part of my working life was spent with the victims of domestic violence, helping them to get justice in Court and to get to a place of safety at home. So I have an inkling of what you must have faced.

Building a career shows that you are an amazingly strong, resourceful person.

I am aware that we have entered deeply personal territory. You can PM me if you want. But really we should both be asleep. Bless you x

[morrison in reply to SheffieldJane]

Xx

[Sandy1947 in reply to morrison]

Hope symptoms disappear in the morning. Let us know how you feel. Glad you got rid of the abuser!

[Sandy1947 in reply to SheffieldJane]

You are a compassionate soul! I was struggling from 15mg to 14. Tried 3 weeks every other day 141/2-14 neck, leg and arm pain returned back to 15 on Wednesday.

[SheffieldJane in reply to Sandy1947]

Hi Sandy,

I am sorry you are struggling to get down from 15 mgs. Am I right in remembering that you have only been diagnosed for 4 months or so and your condition is complicated by significant Osteoporosis?

Your start dose ended up being 25 mgs.?

During your taper, do you allow yourself a pause to let your body settle?

Our absorbing ability for Pred can vary quite a lot. You may be getting much less than you think.

How about resting at 15 mgs for a week or so before starting a slow taper again with tiny 0.5 decrements? My body balked at going below 10 mgs and had to be tricked and cajoled to getting down. I am now stuck at 7 mgs with debilitating exhaustion. So I'll sit here a while.

It is the holiday season too. Are you sure you haven't been doing a Sandy ie too much. Wishing you well! It is always nice to hear from you.

I hope your Thanksgiving was perfect.

[Oldman-1 in reply to morrison]

I sympathise with your " violent marriage ". Tolerance does a lot from both sides.

[Leeleep]

It’s the PMR . I have a potty chair over my toilet with hand grabs to pull myself up. I had very bad PMR before GCA. They were testing me for myasthenia gravis first. I could not get up from a seat. Chair, toilet and car were very difficult. The prednisone made a big difference for the PMR muscle atrophy. Still weak but 75percent more strength.

[morrison in reply to Leeleep]

Not quite there yet. But hope you're OK x

[Zofitmogelijk]

Hi Morrison it is even later in Holland now, hope you are having sweet Dreams by now, but if you are not, a virtual hug for you.

[morrison in reply to Zofitmogelijk]

Getting ready to sleep. Thank you from England to Holland. X

[CrazyTrucker]

You're not alone. Never forget that.

[Hindags]

I thought I remembered a post several months ago about legs collapsing. I searched and found this. I don't recall a resolution, but you might be able to message the poster and find out. healthunlocked.com/pmrgcauk....

I too have times lately (8.5) where I feel my legs getting weak and when I feel more pains. And those times seem to be getting more frequent and the feeling more intense, though not necessarily longer.

I'm becoming more convinced that for me it's the adrenal thing, though I guess it could be steroid myopathy despite all the morning exercises I do to stay as fit as possible under the circumstances.

For the first time today I felt "it" at around noon. Weak/a bit wobbly and some pain in thighs and shoulder. It usually waits until the afternoon or even early evening. Today was Thanksgiving and the family was going to a restaurant around three pm. I wanted to have the stamina to go and to enjoy, but I had to shower and make myself a bit presentable before I could rest, and perhaps nap. I don't know what happened, but by the time I finished in the bathroom, the weakness passed completely. It is ten hours later now and I'm still feeling fine. Go figure. Can't see how these waves could be the PMR, or even Pred. withdrawal (It has been about nine days now on this dose.) But what do I know. PMR never ceases to perplex and worry.

Please let your MD. know so you can get to the bottom of this. Don't hold onto this worry. Can't help to do that, even if you're fine in the morning.

[SheffieldJane in reply to Hindags]

The power of love Hindhags!

I can relate to what you are saying about Adrenal Insufficiency, I feel sooo tired most of the time. I wake up looking forward to going to bed.

The young GP ( who diagnosed me and I have a lot of respect for and he for me) reacted to my suggestion that I could have Adrenal insufficiency with a kind of double- take as if that would be so rare from taking Pred as to be freakish, in our kind of scenario. My Rheumie on the other hand is prepared to do the Synacthen test when I am down to 4 mgs.

The GP is testing blood sugar and referring for sleep studies, all bases covered. I hope it is as rare as hen's teeth.

[Hindags in reply to SheffieldJane]

SheffieldJane Thanks for those words. I did indeed think that being happy for our Thanksgiving dinner might have helped, but I kinda sorta doubt it. What I felt was a slow awakening from a somewhat painful and a slightly nauseous heaviness. Like a train pulling out of the station. The more I kept the momentum rolling the more energy I had. By the time we left for the restaurant I was already ok. Unfortunately daughter who would have hosted came down with shingles a few weeks ago and is still under treatment. And I got sick with PMR last Thanksgiving, just after hosting us all. So it was a restaurant this year and the food was good.

Now, we did have a good time, and I did NOT think about my diet. Sugar and Carbs as served. And a bit of great red wine that didn't give me a headache. I came home with enough energy to finally attack my closets, try on all the clothes that are now impossibly big and set them aside for donating to charity. I know I may be going to the Charity Store and buying them back if I continue to indulge, but it felt good to make the declaration so to speak.

Sugar/Carb High after almost a year with nothing like stuffing and bread and caramelized sweets and cranberry sauce and pastries?

[SheffieldJane in reply to Hindags]

That all sounds wonderful Hindhags. I can so clearly imagine how that would feel. I would love to feel the easing of this horrible nauseous, aching heaviness. You give me hope that I might one day. I don't think this is a flare, I am confused by my symptoms.

Your poor daughter! Is it contagious I can't remember?

I am not being careful with my diet, I think I feel sorry for myself. It will lift, it always does.

[Hindags in reply to SheffieldJane]

SheffieldJane,Wouldnt it be wonderful to be able to control how we feel? With the blink of an eye or the snap of a finger? When I used to work crisis for Kaiser Psychiatry, I'd often ask a teen who had been brought to the ER (A&E) after an overdose, "When you took the OD, did you want to die or did you want to change how you were feeling in the moment?" 99% said they just wanted to stop feeling what they were feeling. They simply didn't know that just waiting would inevitably lead to a change.

That's the wisdom we get with age. But it is so very hard to stay patient through suffering, physical or emotional.

[SheffieldJane]

How are your legs today Morrison? You were on my mind when I woke up. 🌸

[Hidden]

Ditto.

I have legs with a mind of their own but had a funny do one morning when my left leg from knee down didn't want to move and when i tried to left my toes sort of folded under my foot. Tried 3 times then it seemed to be fine if a bit funny feeling. Dr suggested might be calcium levels due to taking calcium. That hasn't happened again yet and I was happy to not do investigations unless it did/does.

As sj says...hope you have better legs today.

[Joan-E-D]

Did you do too much exercise yesterday? I had my legs collapse in the street one morning after doing Tai Chi. It was scary, but people were so kind and picked me up and took me into a near by building society to rest on their chair. Fortunately I only got bruised, nothing broken. I'm being a bit more careful now about how much exercise I do, e.g. some of the Tai Chi sitting down. Take care of yourself. I hope its nothing more serious than your PMR.

[Hindags]

Yes, Morrison, how are you feeling this morning? I had one other thought after we all signed off last night. PMRpro has talked about how PMR interferes with blood flow/oxygen to the muscles. I wonder if the oxygenation of those muscles just fell below what was needed? (Just another of my wild guesses).

i was having a fair amount of leg calf cramping/pain/stiffness. I was able to help it in two ways. 1) Before I get out of bed I do lots of ankle rotations 20 to the left then 20 to the right, then both internal then both lateral. 2)The other thing I do is to hold onto the back of a sturdy chair and with one foot forward and the other back as far as possible I rock up on the toes of the forward foot while the back foot is flat on the floor. I do this about 10-20 times and then change feet. I do this in socks or barefoot. It feels like a good stretch. When I'm done, I massage (rubbing) up and down my calves, thighs and groin. (Boy is this stuff hard to explain in writing.)

[Hindags]

Morrison. I hope you are feeling better. Please stay in touch. Been thinking about you....sending hopeful thoughts.