Spider in the bath!

[43tripandskip]

I woke up this morning with strong withdrawal symptoms - stiff legs, knees, shoulders and arms. But Hooray, I've tapered down to two and a half mg pred. Foolishly I decided to have a bath very early this morning.

Getting out of the bath was difficult. My legs - always a source of weakness since having PMR - decided they would have the strength of half a leg between them. Struggling to get out I fell back into the water completely soaking hair, walls and floor.

So what to do? Could I be stuck here for a long time? Sleeping husband couldn't be woken and anyway, doesn't have the strength he used to so as to be able to lift a hefalump wife who still hasn't lost all her Pred weight. What stays in the bath? A spider - but he/she has the choice of disappearing down the plughole. Not a choice I'd care to take. What if the fire brigade was called in the middle of their breakfast? Oh - too humiliating to think about

I sat there thinking of the other day in hospital, listening to the Consultant Gastroentiologist who told me that apart from having PMR there was nothing wrong with me. "You are now so low on Pred that you can come off the two and a half Pred that you are on now."He said, "It would be quite safe to do so." While I listened to him I experienced the hundreds of tiny blunt prickles like centipedes in clogs marching on the spot over my shoulder and neck. In the far corner of one eye I had the experience of a shape like a rainbow coloured bevelled mirror distorting my vision. I moved my head so that the bevelling made his face look like a Picasso portrait. He smiled benignly at me - at least I think he was smiling.

"I don't think I'm ready to come off the Pred," I said, glad that my GP would always guide the amount of Pred I should be on. Saying goodbye, I leaned on the seat of the chair to get up then waddled slowly down the corridor.

But here I was in the bath - what to do? The handles at the side of the bath reminded me of the parallel bars used by gymnasts in the Commonwealth Games. If I could draw myself up on the bars and use one of my heels for balance... I tried, and with one almighty push I was able to stand upright. Yes - a Gold medal winner - in my eyes anyway!

[Hidden]

Dear 43tripandskip, I didn't mean to laugh, as I am sure this was not meant to be at all funny! ...but I'm sorry, you made me laugh out loud! I am happy you got the Gold Medal!!!!

I love the line, "... I experienced the hundreds of tiny blunt prickles like centipedes in clogs marching on the spot over my shoulder and neck! " Perfect description of what I feel in my feet, legs and arms everyday! I may have to plagiarise your word!!!!!

BRAVO!

[43tripandskip in reply to Hidden]

Yes, the centipedes have been my friends for a long time now. Perversely, I even find it quite soothing to have them gently stamping up and down!

[PMRpro Ambassador]

What in the name of goodness makes a GASTROENTEROLOGIST an expert in reducing pred dosage in PMR? I had a Freudian moment there - I omitted the second S!!! Two s's - safe? Sensible?

Where is the virtue in being on 2.5mg if you can function better on 3mg? Or even 4mg?

[43tripandskip in reply to PMRpro]

Yes, it was a surreal moment. If it wasn't for all the help and experience I've had from this site, I might have taken him more seriously.

[Soraya_PMR]

Oh well done! Now, do you need help to climb atop the podium to receive your medal?

So many rheums get it wrong, I think you’re absolutely right to dismiss Picasso the Gastro’s advice to cease predding.

You’ve done so well to get to 2.5, I know you’re going to creep oh so slowly to the finish.

[43tripandskip in reply to Soraya_PMR]

Thanks for your praise, it has replaced the need for a podium! I'm determined to go more slowly than ever now I'm down to 2.5

[BirmLiz]

Well done 43tripandskip you beat it! Had all the problems you describe and had to roll over in the bath onto my knees to stand up and get out. Boy did those knees ache afterwards. All the best to you in reducing the preds - I've been off them since December 2016 so there is light at the end of the tunnel.

Take care xx

[Klah in reply to BirmLiz]

So nice to hear from someone who had the horrible pain and still recovered!! Hard to imagine when you are in it that it will ever end. Very depressing.

[BirmLiz in reply to Klah]

Hi Klah, many people who haven't suffered PMR or similar will say - keep positive and you'll come through just cheer up. I found that I had to accept when I was down, frustrated, fearful or angry (or all of them at once!), have a good cry, then carry on. I had it in my head that I'd completely seize up if I sat for too long so had a clock nearby and every half hour I would heave myself painfully out of the chair even if I just shuffled to the kitchen and back (no I didn't eat every time I got there!). We all should pat ourselves on the back for facing the pain and carrying on - we are stronger than we ever knew even if we shed a few tears on the way. It can seem lonely but the people on this site all know what this condition entails and sometimes it's like having a big hug through the ether (a real one would hurt anyway!). My life motto has become: Laugh when you can, cry when you need but know the b******s can't grind you down.

All good wishes for your recovery xx

[43tripandskip in reply to BirmLiz]

I hadn't thought of rolling over - hope I never have to be in that situation again, but will keep it at the back of my mind! Getting off Preds seems a long way off, I'm so pleased you got that far.

[Mitziecat]

Hi. Must have been a bit frightening for you. Have you recently reduced to 2.5 mg? I ask as you said it was withdrawal symptoms. If it was as strong as you say, sounds like you are on too low a dose.

My withdrawal aches tend to last about a week & I would start to worry if they persisted longer or became strong like you said. Maybe you should increase slightly if it persists or becomes worst.

However, you have been very brave to sort it without help.

[43tripandskip in reply to Mitziecat]

They are withdrawal symptoms as I was tapering while I was at the Gastroenterologist and have been on 2.5 Pred for four days. As my dosage has got lower, I seem to have stronger aches. What I have done in the past is to take an occasional extra half Pred on days like yesterday. This usually evens things out.

[SheffieldJane]

That was a very lively ( brave) account of a situation that would have a lot of us in tears, never mind seeing the funny side.

I don’t think that you are on enough Pred with the symptoms you have and the mobility problems. I would be inclined to raise my dose to about 5 mg to see if I could obtain a better level of relief. Seriously, if you are experiencing a visual distortion that could be a GCA warning and it urgently needs to be reported to your doctors. As does the level of pain and stiffness you are experiencing. In the meantime invest in a big bell to wake that husband of yours in case you get stuck again.

Sorry to be a wet blanket when you were being really funny. ☹️

[43tripandskip in reply to SheffieldJane]

Thanks for your advice. If the situation gets worse I will definitely take your advice, but at the moment the symptoms seem to follow my usual pattern of withdrawal.

[Leilagirl]

Oh thank the Lord!!!

[43tripandskip in reply to Leilagirl]

That's what I thought!

[Carrollee]

Hi 43tripandskip. Just a little bit of advice in case you find yourself in that situation again (been there many times). Let the water out first. Before my diagnosis I found myself in this situation many times and my fear was alway falling and knocking myself out and drowning (vivid imagination). If you let the water out first the worst thing that can happen is you "come round" feeling a little chilly, but at least you will come round. Also you aren't working against the weight of the water. I live on my own so maybe I have to "think outside the box" or should that be "think outside the bath". All the best and well done on getting to 21/2mg that's brilliant and well worth a gold medal in my books 🤗 Cc

[43tripandskip in reply to Carrollee]

Thank you for this advice. I've committed your advice to memory There was one point at which I wondered if I shouldn't grab the laundry basket which was next to the bath and use it to sit on. Not a good idea seeing it's wooden with a cork top for sitting on!

[sennetta]

Last summer I made the mistake of letting the water in the bath drain away before I got up to get out of the bath. There was then a problem of how to get out. It took me about 5 minutes to work out that my problem would be solved if I filled the bath back up with water. Worked a treat - the only trouble was that I had used up all the hot water in the original wash and soak session! So it was perishing cold, but at least my dignity was intact and I didn't have to call upon other members of the family to beak down the doorand manhandle me out!

[43tripandskip in reply to sennetta]

An interesting situation! It looks like the only solution (and that would be for people with really long term illnesses,) is to get a new bath installed which has a door on the side. You can then let the water out in the usual way and then open the side door and slide out of the bath! I'm just hoping that I will never need such an extreme solution!

[PMRpro Ambassador in reply to 43tripandskip]

There are various more temporary solutions - the local Occupational Therapy or physio department should be able to advise.

[43tripandskip in reply to PMRpro]

I hadn't even thought of that! What a good idea. Thank you

[Jackoh]

Yes collect your gold medal!! I've had to resort to the roll on knees technique which worked for me in an hotel( don't have a bath at home only a shower so hadn't had much practice!!

[43tripandskip in reply to Jackoh]

I hadn't thought of rolling over at the time, but because my legs hurt when I tuck them under me, I think I might be afraid that once I've rolled over and the knees don't work, I might then have difficulty rolling back to the original position. But definitely a manoeuvre to remember for the future. Thank you.

[artfingers]

Yes, here in the states we have the commercials that go something like "help, I've fallen and I can't get up." There is a device you purchase that you can push the button on to summon help. My sister-in-law falls all the time and just calls the local police who come and help her get up. But that is a whole different story I don't want to get into. You write beautifully!

[43tripandskip in reply to artfingers]

They are marvellous devices which have saved lives. But for me, my imagination takes over and the idea of the fire brigade AND the police force arriving to rescue me from the bath - it makes my mind boggle! Thank you for your kind thought.

[PMRpro Ambassador in reply to artfingers]

Both my mother and my MIL had one - they were probably more of a comfort to me than them!!!

In the UK it would be either a designated person who went to check or the ambulance service - who are medically qualified after all. They carry lifting aids on the ambos as well as being trained in lifting.

[artfingers in reply to PMRpro]

Yes, it is interesting that my sister-in-law almost prefers being waited on. Sad that. I think most of the rest of us fight this as hard as we can. She thinks she has muscular dystrophy (never really diagnosed, just guessed at). It is interesting to me how the UK and US are different in some ways, especially where medical treatment and services are concerned. In some ways I like that I can get in to see someone almost immediately, but on the other hand, it does cost us in other ways. I suggested my two brothers get a strap the physical therapy folks use to help with lifting my sister-in-law but they refuse. A co-dependent household over there for sure and I try to stay out of it!

[PMRpro Ambassador in reply to artfingers]

Not saying she doesn't have MD - but it is very much less common in females whatever sort it is.