Hi everyone.....

[FootieFanatic]

It's really good to see there is an active community here. I've just joined. I was diagnosed with PMR a couple of weeks ago after 3-4 months of symptoms and I'm now on Prednisolone as everyone appears to be. My main problems at the moment are the sheer exhaustion each day and the fevers that I get at least a couple of times each day. Does anyone have any suggestions to ease these? I am off work at the moment but will need to return at the end of November and don't actually know how I'm going to cope.

[piglette]

The PMR mantra is REST, REST, REST. Auto immune diseases often seem to cause fatigue.

[FootieFanatic in reply to piglette]

Thank you.

[PMRpro Ambassador]

Hi and welcome.

The fatigue bit is something you have to manage - this is a post all about fatigue do read all the links:

healthunlocked.com/pmrgcauk......

[FootieFanatic in reply to PMRpro]

Thank you. Are the fevers "normal" too do you know?

[PMRpro Ambassador in reply to FootieFanatic]

Is it actually a raised temperature or sweats as if you have a fever? Both are seen in PMR, some people have them, others don't.

[FootieFanatic in reply to PMRpro]

It's sweats (at least twice a day) as if I have a fever. And I often awake (if I sleep at night) with a wet pillow.

[PMRpro Ambassador in reply to FootieFanatic]

Yes, lots of people will sympathise with you.

[DorsetLady PMRGCAuk volunteer]

hi and welcome,

Maybe have a look at this - for general info -

healthunlocked.com/pmrgcauk...

..and this re work - so you have some idea what your employers should be doing to make working life a bit easier -also talk to HR/LM/Union rep if there is one -

citizensadvice.org.uk/work/...

[FootieFanatic in reply to DorsetLady]

Thank you. I've not seen anywhere that PMR is formally classed as a disability - have you seen this anywhere?

[DorsetLady PMRGCAuk volunteer in reply to FootieFanatic]

I think it is recognised under the Employment Act, but not necessarily a disability when it comes to claiming benefits- there have been posts about in in past, but can’t find one at moment.

You might be best speaking to CAB to clarify.

Hopefully members in similar situation will give more info, we do have quite a few still in employment.

[FootieFanatic in reply to DorsetLady]

Thanks.

[DorsetLady PMRGCAuk volunteer in reply to FootieFanatic]

I will have a rummage through-when have time..

Ahh don’t need to! Thanks PMRpro

[PMRpro Ambassador in reply to FootieFanatic]

citizensadvice.org.uk/law-a...

"You have an ‘impairment’ if your physical or mental abilities are reduced in some way compared to most people. It could be the result of a medical condition - like arthritis in your hands that means you can’t grip or carry things as well as other people.

An impairment doesn’t have to be a diagnosed medical condition. If you’re suffering from stress, you might have mental impairments - like difficulty concentrating - as well as physical impairments such as extreme tiredness and difficulty sleeping. It still has to have a substantial and long-term adverse effect on your ability to carry out day-to-day activities.

Your impairment doesn’t have to stop you doing anything, as long as it makes it harder. It might cause you pain, make things take much longer than they should or mean that you’re unable to do an activity more than once."

PMR fulfils that - so your employer is required to make reasonable adjustments to allow you to continue working.

[FootieFanatic in reply to PMRpro]

Thank you both. Very helpful.

[Sharitone in reply to FootieFanatic]

It's not a condition that automatically gets you benefits, but that doesn't matter if you can demonstrate that your level of disability (=needing help) is high enough.citizensadvice.org.uk/benef...

The problem you may have with PIP is that you have to expect to have the condition for at least 9 months more, and of course you're hoping to get better.

[Wallysma]

I am in the states...so.not sure if this will help. I was diagnosed with Chronic Fatigue Syndrome in the '80s. I had a crazy job with lots of stress and hours...which I loved. But after being home sick I had to go back so I thought about what I would need to get through the day...i.e., breaks, naps in quiet room;.working from home especially when I had to write, and other small things. CFIDS was controversial.so I pulled together some info for the management team to read including info on the symptoms. This worked out well.

As I developed more conditions over the years whenever I had to deal with times when my body would go off the rails...I continued that type of communication. Then in 2008.when it was suggested I go on disability I had to deal with an insurance company and then the government filling out more forms than I have ever had to but I also supplyed my own attachments. It helps to put the human side of these diseases in front of those making decisions. Here people rarely get gov't disability on the first try if at all but I did and I believe it's because I physically went to apply and had the extra info. I got one call from the case worker and found out it was approved. It takes some time, you can write up a sheet on symptoms and what it's like to live with it...that kind of thing and then this site is a treasure trove. Sorry so long.but I know it made a difference...helped me keep working at one point and helped me stop when I needed to (which was awful but necessary).

Good luck with this.

ps take a fan to work if you get the sweats during the day....I also get them day and night time. Take care.

[FootieFanatic]

Thank you so much for taking the time to write this. It's much appreciated.

[alangg]

Hi.

I am not a medic... But having read your profile, I might want to question the diagnosis.

You sound similar to me - male, under 60 (when diagnosed), quite active, demanding and strenuous job, generally physically fit until 6 months of increasing stiffness with some pain until prescribed 15mg of Pred per day.

But for me, 15mg of Pred worked wonders - the stiffness and pain were gone (almost) and I could return to almost normal life. There was no exhaustion or fatigue and no unusual fever symptoms or sweats.

From what I have read on this forum, 30mg is a high dose for just PMR and I believe would, at that level, relieve pain and inflammation whatever was causing it. I don't know what else could be causing your symptoms, but I would want to be sure that it is PMR and if it is, then why are you on such a high dose of pred and why are you not feeling hugely better after 2 weeks of medication.

I wish you luck and hope that things improve for you very soon.

[DorsetLady PMRGCAuk volunteer in reply to alangg]

Do agree with you that FootieFanatic should be feeling better on 30mg - but unfortunately it doesn’t always happen for everyone.

However, they may have other issues as well - perhaps long covid so probably more investigation required.

[PMRpro Ambassador in reply to alangg]

The recommended range for starting dose is 12.5-25mg but exceptionally 30mg. Some people just need more and longer - but you are right, at that dose questions should be asked.

[FootieFanatic]

Thank you all for your interest and concern. The pain had certainly subsided massively although my hip is still giving way and my knee occasionally hurts. The Professor but me on 30mg for a period of 4 weeks which ends on 4 November. I have an appointment with him on that day and will obviously be seeking some further answers re condition and medication. As I have mentioned it is the fatigue and the sweats that are causing the biggest issues currently (the fatigue is crazy).

[Alebeau]

Welcome to the club

You are going to get a lot of good advice from these very knowledgeable members.

The tip that helped me the most was splitting the prednisone as I was always achy in the mornings.

I wish I had done it way sooner as I was almost at the 2 year mark when I found that advice on this forum.

Also avoid taking pain medication - instead manage the pred dose to keep you pain free.

Good luck.

[FootieFanatic in reply to Alebeau]

Thank you.

[MrsNails]

Hi & Welcome, sorry to hear you have PMR - the fatigue is awful & it does just come from ‘nowhere’ if you find it happens at a certain time try to factor a rest in before it hits & yes the hot flashes are definitely uncomfortable, l rarely wear a coat & only ware a jacket even in the winter but more often than than not - l’m taking it off in the shops!

l found that following the ‘hot flashes’ l’d sometimes get the overwhelming fatigue not so much at the moment because l am on an adequate dose of Pred.

You will be entitled to return to work on a phased return & on shorter hours - check with your HR Department.

Best of Luck 🍀

MrsN

I have attached our FAQ’s for you? Where you should find some helpful information

healthunlocked.com/pmrgcauk...

[FootieFanatic]

Thank you.