So glad I'm not mad

Bones, joints and muscles
1

Thank you Eileen for your reply and help on another thread that I can't find again! The only forum I'm used to is for rescue greyhounds and this one works so differently and has no pretty pictures wink so I'm a bit lost.

I'm relieved to know that hands and feet can be affected, as that's not something that is in the leaflet from Drs and mine have bee sore for 2 years! Do you know if the length of time being ill equates to the length of recovery time? I've been going back and fore to the Drs for 2 years and since last september practically ever other week as I was very nearly crippled. I was at my wits end because I know they thought I was a bit neurotic, eventually I asked for a copy of my medical notes and before I had a chance to study them properly a locum Dr listened to my symptoms from top to toe and said PMR.

My next appointment is on Friday so I'll try and pluck up courage and ask for an increase to 20mg as you suggest it may be needed since I work in a shop and it's quite exhausting at times.

Thanks again,

Irene

2

Hi Irene, re your question as to whether the length of time untreated PMR equates to length of time for recovery, I am interested to know if the amount of time undiagnosed, therefore, untreated equates to more  damage caused by the auto immune condition and PMR symptoms?

all the best, christina 

3

All I know is that 20 years ago when I was eventually diagnosed with Hashimoto's disease after being practically an invalid for 2/3 years it took me at least that long before those other so called "magic pills" thyroxine, really worked. Just trying to prepare myself for the long haul again.

So little has changed in diagnostic abilities of some Drs it's depressing and I'm sure if I hadn't been through it all before when I was much younger, I'd have given up on them this time. Do you have other immune diseases also?

All the best, Irene

4

I know how difficult it can be to find something again on this forum - I've been using it in various forms for 6 years and it is so easy to lose something specific!

It won't be in the leaflet because, although patients have been saying it for a long time, it was only last year that Leeds did some work and showed hands and feet can be involved too. Previously it had been thought that if you had hand and foot pain it was more likely to be RA and people would be treated for that - and of course the DMARDs used in RA don't do anything for PMR.

I don't know about how the times equate - MrsO had been ill for well over a year before diagnosis and it took her about 4 or 5 years to get off pred. I'd been ill for 5 years or so - I'm still on pred after 5 years and counting. But I can't say that anyone has ever looked at it. I had similar problems with my GP because i had symptoms but normal bloods and the one I saw most hadn't a clue - but I circumvented the neurotic bit by saying to his face I realised he probably though that! I do keep saying to people who complain they don't want to go to the GP because there are "only locums" that locums aren't all bad - they have a different view of a chronic patient.

Do seriously consider whether cutting your hours may be possible - I do realise all the problems, but PMR does respond well to rest. I don't know what sort of shop - but if it is a shop where you have to stand a lot I would have HAD to stop. I couldn't stand for more than 10 minutes, the fatigue was too much and everything ached. That was without pred of course but working would still have been difficult even with pred.

5

Hello Irene, no, as far as I know I have no other auto immune condition. I was diagnosed in dec 2013 after experiencing the symptoms from the September. I was 52 when symptoms first started and 53 when it was diagnosed. I am very lucky in that now I'm being treated, I'm down to 8mgs following Eileen's very slow reduction, I am doing very well and absolutely no one excluding me would ever know I had PMR.

presently I am being monitored quite regularly, especially now I'm reducing because the powers that be think I might also have an auto immune condition with my liver, but the jury's out in that one. The only way they can tell if I do is when the preds are reduced my other liver markers rise, but so far so good although some of my liver markers are worryingly high, gamma gt 225, for eg, every other marker is okish. All the best, christina 

6

Oh yes, and pre diagnosis therefore pre preds, my thumbs were stiff and painful but the rest of my hands and feet were ok. Christina 

7

Oh I'm glad you are doing so well with PMR, that's encouraging and I hope the liver settles again too.

So many younger people here, I must say I was aghast on seeing the leaflet I got on PMR with two white haired, with glasses and obvious false teeth people on the cover...LOL

8

I am at least able to sit often as it's my own craft shop, but I'm barely scraping by financially after having to give up the most lucrative part - serving coffees and teas, due to chronic hip pain. I have applied for PIP and if I'm lucky enough to get through their rigorous rules and interviews then that would enable me to keep working on a low income. If not I'll probably be forced to give up my shop and completely depend on benefits as it's another 6 years before I get the state pension. I haven't even told my grown-up children yet as they live so far away and I don't want them to worry about me when life is so hard for young people in this austerity climate we still have.

9

Yes, they're are loads of gorgeous gals and boys out there suffering from this condition and we would have modelled for free, although I must confess I do wear glasses! Christina 

10

I just had a thought, and you may tell me that it wouldn't work, but if teas and coffees and possibly cakes also is your most profitable area, and you now find it impossible to do, how about having drinks on hotplates with cakes etc beside them. Get customers to help themselves, it could be managed by them having to go past where you sit to pay. I'm also thinking that the majority of people visiting a craft shop are honest, - being an amateur artist myself!

Just a quirky thought. :-)

11

Hi Susanne and Irene, how about this idea also. If you can no longer do the refreshment side to your business, why not sublet that business to someone else who will pay you a weekly rent for the business. Also how about introducing a crafty club. It could be held on the quietest afternoon of the week for 2.5 hours. All members will have to buy their coffee, tea and cake and at the same time hopefully they'll purchase knitting needles, wool, embroidery yarn, etc to complete their crafts. Again just a quirky thought! Regards, christina 

12

We are brimming with great ideas! :-)

13

Thanks for thinking of me, I actually tried that last year and although the locals were fine about self service, the visitors didn't like it at all, they really want waited on when on holiday. I depended on summer visitors to make up for the lean winter months but without many of them I couldn't get good discounts for coffee beans etc. I have diversified a wee bit into selling local art and craftwork, so I've a few months yet to see how it goes.

Again thanks, Irene

14

You're welcome and good luck on Friday.

15

Oh my goodness, wish I knew you all last year! This was really the first time I struggled to make decisions, maybe because I live alone and had no one to talk things over with I probably made some mistakes. However I'll have to live with it as there's no going back for various reasons. Unfortunately my shop is not big enough to divide, just had a few tables in amongst the crafty stuff and honestly nobody would work for the small amount of profit I made!! It was enough for me to live frugally on but that's was all! There already is a craft and learning centre here that's a charity so it's free. I'm pretty sure I've thought of everything possible in a wee village, but still welcome any of your ideas to save me from the streets wink  Thank you all

16

You know Irene, it's horrible reading fellow sufferers predicaments following their PMR diagnosis. Often it hinges on not being able to continue to work to a capacity that only a few months earlier they could, thereby money becomes a real issue. PMR really does effect patients on many levels. I really do wish you all the best. Regards, christina 

17

Please would you remind me of Eileens slow reduction.I have had a flare up after being off pred for three weeks.I have only increased to 3mgs daily and am very comfortable.I would like to start reducing by half a tablet .I have been on 3 for 3 weeks nd feel good and not much stiffness even in shoulders etc.Would much appreciate a refresher on slow reduction.Many thanks .

18

I'm really struggling at the moment.  It's been 7 months since I was diagnosed and I do believe it's only just starting to hit me that I'm not going to get better any time soon.  

I work full time as a public servant in Australia.  I  went to work on Monday and just couldn't cope and came home and went to bed.  It's now Wednesday and I'm still at home.  There nothing particularly wrong, I'm just tired, flat and unintested in anything.  I'm not sure if it's depression or pred induced. 

The thought of going to work and spending all my energy on something I find meaningless is grinding me down.  I just want to stay home and take care of myself and Mr Flip.  

I can't do most of the things I want to do on the weekends as I'm struggling to do the things I HAVE to do, even though Mr Flip fully pulls his weight (literally!).

The more I learn about pred the more I hate being on it.  The moon face and other side effects are also getting me doe.  I'm so embarrassed by my ballooning face and body. 

Im off for another blood test today and back to my (wonderful) GP on Friday.  I'll be speaking to her about all this but I fear she'll just increase my antidepressants.  I want to DO something positive to help, not just mask it. 

Mr Flip won't hear of me giving up work, not even going part time. We are trying to get our superannuation up so we can both retire. He's 57 and I'm 51 so theoretically we both have years before that could happen.  That alone is depressing enough! 

 

19

Hello flipdover, I'm sorry to hear about the way you are feeling because I too have been there. But for me it was more about getting my head to accept that I now had a condition that hindered me greatly and I was totally scared about the condition and my future with it. 

Then one day I woke up and I was simply so fed up of being scared. Worrying about whether I was going to live into my 60s, 70s, 80s. And I just thought, you know what you're spending so much time thinking about dying that you're doing very little living.

i have now accepted I have this condition. Do I like it? Like hell I do, but I have it and now that I am at 8mgs. (Diagnosed December 2013, first symptoms September 2013), I feel so much more positive. I had a flare December last and now I have experienced that I feel more experienced to know if I am suffering another one in the future. I fortunately am almost pain and stiffness free now I'm on preds and both my GP and my rheumatologist both believe in the very slow approach for a smoother recovery, so I am not burdened with the added stress of having a useless clinician poorly managing this bloody condition.

flipdover, you are only 7 months into this recovery and at that point in my recovery I was still scared tinged with abit of depression, but I'm hoping you will also have that eureka moment so to speak, but it's really about acceptance, I truly think that that was the defining point for me.

why don't you write 2 lists, 1 can do, and the other can't do. I hope it won't be long before the can do list is longer than the can't do. 

This is no criticism of you, but I am shocked by the number of my fellow sufferers who worry about what others think about them because of their moonfaces! I am 3 stone over weight, but losing some slowly, and my face is fat and puffy and I don't care a cow about how I look or how others perceive me, my mother always brought me up to believe in my self, and I do. I hope to one day look look more attractive, not for others but for myself.

you are worried that your Dr will give you antidepressants if you reveal to them the level of your depression, but if they help, take them. We all need as much help as possible to get us through this, so stop being so hard on yourself. My husband still loves me, my dog still loves me, that's all I need for now! I wish you all the best and I do hope you find help, whatever help it is that works for you, because negativity is destructive we all need every spare morsel of positivity to help see us through this.

20

Hi Beatrice, after all of your success in recovering you now appear to be suffering a relapse. I don't know if treatment for a relapse is the same as for a flare, but firstly maybe you should stay on 3mgs for a while longer.

anyway Eileen's slow reduction:

1 day new dose, 6 days old dose

1 day new dose, 5 days old dose, 

1 day new dose, 4 days old dose and so on until you reach 1 day of each dose then reverse the above until you are on the new dose all the time.

i do hope this hiccup is only temporary. All the best, christina