Lost my mojo!

[Hirwaen]

Could you experts clarify something for me? All the info on PMR describe the symptoms as being pain and stiffness in shoulder and hip area, always bilateral. What is never mentioned is the fatigue and lack of ' momentum' we all have. Is this because that is a side effect of the steroids and not part of pmr? Just wondering!

[Arleneh]

Hi Hirwaen. Fatigue was definitely one of my pmr symptoms alongside increasing stiffness and pain. 😕

[DorsetLady PMRGCAuk volunteer]

Hi Hirwaen,

Fatigue is one of the biggies in PMR/GCA, not sure why you say you haven't seen much about it, it's very often mentioned.

It may not be in the post heading, but most contributors refer to it. It is definitely a major symptom of both illness, and as such is listed in the blurb about both. Unfortunately it can also be a side effect of the Pred.

This link may help you understand and maybe recover some of your mojo

healthunlocked.com/pmrgcauk......

[nevagivup]

I lost my mojo a few weeks before PMR struck. To me, both the disease and the treatment keep your mojo down. Except for the first few weeks of Pred when I was on 15mg daily. I was like a fly on energy-boosting pills, buzzing frantically around inside a bottle. Never has already spotless house been so clean or well-organized. These days when I see things that look out of place I just shrug and walk past.

[Sandy1947 in reply to nevagivup]

Funny! Pre PMR I was the energy bunny like many people on this site. Now I look forward to afternoon rest period and believe in siesta which is certainly not the norm in frenetic USA, particularly NY! Watching the people fly by makes me thankful PMR got off that train!

Keep shrugging and walk away! Thanks for the laugh.

[nevagivup in reply to Sandy1947]

Sandy1947, as with you and others I was like a well-known battery-driven bunny too, but suffered total burnout with flat batteries, adrenals gave in, I lost my mojo and PMR said "Hello, I'm moving in!" I'd still like to get my mojo back. Maybe next year?

[PMRpro Ambassador in reply to nevagivup]

Except eventually you may be like me - even if I have some mojo I can find better things to put the energy to than housework...

[nevagivup in reply to PMRpro]

Do you also find you don't have the energy to concentrate on reading a book? I was a voracious reader before PMR. Nowadays staring into space is more relaxing, with no need to concentrate on anything. However, one doesn't want to become vacuous blob either.

[PMRpro Ambassador in reply to nevagivup]

I had that problem pre-pred but it did improve some once I was on pred. But don't worry, it WILL improve with time. I'm back to reading book after book - thank goodness for Kindles! Not to mention blogging in screeds...

[Sandradsn in reply to nevagivup]

I stare into space a lot wondering where my mojo went! I've just started to try and read a new book,the first one in ages.I'm off to Cornwall on Monday for a few days and hoping I will feel more 'with it' there!!

[BonnyQuine in reply to nevagivup]

Snap, Nevagivup. I have GCA but otherwise was/am exactly the same. It is gradually improving, however.

[Sandy1947 in reply to nevagivup]

Maybe next year for both of us! Resting on my bed before dinner.

[Hollyseden in reply to nevagivup]

"shrug and walk away" Oh I so get that!! Thanks for that 😊

[GOOD_GRIEF in reply to nevagivup]

Since the onset of PMR last November, my idea of doing housework is to sweep the room with a glance - and nothing else!

[Sandradsn in reply to nevagivup]

I call that shrug therapy!! I do it all the time!

[Grants148]

Herwaen,l found that fatigue and a lack of motivation were definately part of the symptoms of Pmg.l found that the steroids gave me so much energy and pain relief after only 48 hours,this being on the first high dose.The trouble is that after reducing the dose right down the lack of energy returns. I also have a lot of stiffness and dull pain in my neck as well as my arms shoulders and legs.The trouble with this ghastly Pmg is we may look OK to other people on the outside and they do not always understand our lack of motivation and difficulty moving around very quickly because of the stiffness in our muscles

[PMRpro Ambassador]

Not sure where you've been reading - fatigue is almost always mentioned. Apart from anything else it is part of almost all autoimmune disease.

We have been talking about the lack of mojo in PMR recently on the patient.info forum and several people realised that they also have the "I can't be bothereds..." - I do!

Unfortunately OH doesn't get it - and says "If you hurry up..." or makes snide comments about clearing up. Which wouldn't be so bad - if he did anything to help...

[HeronNS]

In spite of what everyone else has just said, I wasn't fatigued before PMR, nor after pred until I approached the 7mg level. So, as usual, we're all different.

[Mrsd12f]

Absolutely overwhelming fatigue for me - gave a whole new meaning to the phrase "sick and tired". For months, I had to go to bed every afternoon and would sleep for a couple of hours. Suddenly realised I'm not doing that, anymore, so progress! (Hope I'm not speaking too soon!)

[Hirwaen]

I know fatigue is a big part of pmr but it is not mentioned as forcefully as the stiffness and pain when it is being diagnosed.Dr Dasgupta has recently published a booklet for GPs and again, fatigue is really only mentioned in Kate Gilbert's contribution to the information. I am almost pain and stiffness free but have no staying power!!!!! I must admit a glass or two helps!🍷

[PMRpro Ambassador in reply to Hirwaen]

That's basically because doctors have rarely had PMR! And have a problem about asking us...

It is a very common topic on the forums believe me.

[SheffieldJane]

Stick around we often discuss the deathly fatigue caused by PMR, GCA and Prednisalone.

[Hirwaen]

Thankyou all you great girls and boys.I asked because I didn't want to delay reduction because of fatigue, it would seem that the Pred controls the pain and stiffness but not very helpful with the fatigue. It was good to hear that lots of you have good days and bad days cos I was blaming reduction of Pred and becoming reluctant to drop my dose. As ever the answer can be found here!❤️

[PMRpro Ambassador in reply to Hirwaen]

You MAY find increasing fatigue as you reduce the dose when you get well below 10mg - then you slow down the reduction to allow your adrenal glands a chance to wake up and join the party. But that is something different altogether and not everyone has a problem.

[enan-illuc]

Hi Hirwaen,

I had extreme fatigue from my PMR/GCA before diagnosis but the Prednisone helps. I still do not have my Mojo back but I will be patient...and nap on!

Enan

[bunnymom]

Fatigue has become a major problem for me after a year and a half. At best I figured I was at 50 percent physically and mentally. I could pace myself and do ok. If I over did I would bounce back in a day or so. Not anymore. Now I would say I'm at 30 percent. Cut my work hours once again.Have no idea why or what the difference is now. Had all kinds of blood work and checked out fine. Was wishing for anemia or something. Dr had no suggestion. Hope you rebound quickly.