Greetings from Georgia (USA), y'all!

[CrazyRunner]

I found this group online and was very heartened to know I'm not the only one who has ever experienced this awful affliction. I'm just looking for encouragement, personal experiences, coping mechanisms, etc. that have worked for others. Thank you for your kind consideration.

[123-go]

Hello and welcome. If you add a bit more to your profile, e.g. your initial symptoms, starting dose of Pred, what dose you're on now and how you are feeling at present it would be a great help. There will be lots of tips and suggestions coming your way. 🙂

[CrazyRunner in reply to 123-go]

I had just finally recovered from an arthroscopic procedure on my left knee and was cleared to run again. While consulting with my orthopedist, I noted an aching in both my quads that seemed to hold me back from running under full power. Gradually I began to get ham, glute, and finally shoulder and neck aching. I was miserable! My orthopedist referred my to a neurologist who diagnosed the condition as PMR (never heard of it but glad it wasn't PMS). She said I should see a rheumatologist for treatment and I said I already had one. He'd seen me in the past for chillblanes (pernio). Seems like I have bent toward trying all kinds of weird afflictions. He confirmed the diagnosis and started me on prednisone 15mg with the intention of gradually scaling it back under his guidance. All this happened since this past April. The meds were amazing and have allowed me to sleep again, but I've noticed I don't quite have the stamina I used to have. I've started walking but nowhere near the distances I used to.

[123-go in reply to CrazyRunner]

Thank you for the info.My symptoms appeared the other way round-neck to feet.

The 15mg Pred seems to have worked well for you and your rheumy may be asking you to reduce that dose soon. Any reduction should be gradual and you will find helpful tips on that if you type 'tapering pred' in the search bar. Others will give you links, The lack of stamina is par for the course; PMR is a systemic inflammatory disease and your muscles/tendons/tissues need time to recover and if you try to attempt your usual exercise regime before your body is ready you will suffer. Rest is an important factor so please don't try to push through any pain or discomfort and listen to your body.

You can help yourself by adopting an anti-inflammatory diet, e.g. plenty of leafy green vegetables, fruit-especially berries-, high protein foods like chicken and turkey and only occasional red meat (small portion). Oily fish like salmon and sardines will help your bones. Avoid fatty foods and sugary items from the bakery which will increase inflammation. Whole wheat grains are far better than white so no white rice or bread. Also, no items from the deli counter which are processed.

You also need calcium/vit D to protect your bones; speak to your rheumy about this. In the UK we are prescribed supplements.

All this may seem daunting but if you adopt the correct practises you'll be doing yourself a big favour.

I wish you well and please keep us informed of how things go.

[Noosat in reply to CrazyRunner]

From an excompetitive runner, used to belong to Atlanta Track Club, after 2 plus years of PMR and down to 4mg of prednisone. I am glad that I can walk more than a mile. It was such a relief when I could eventually sleep because the intense pain in my quads disappeared. I have been down to 1 and half prednisone, but had to go up again. BE prepared for tiredness and lethargy. I no longer fight it, just rest when ,my body says "enough."

[SheffieldJane]

Hello and welcome CrazyRunner! Glad you found us. You will get all of that and more here. Tell us where you're at with PMR and or GCA. How long, what dose, what drugs etc.

[CrazyRunner in reply to SheffieldJane]

Just diagnosed this past April and PMR only, no GCA. On 15mg of Pred currently

[SheffieldJane]

Most importantly, how do you feel ? This always trumps blood test results.

[CrazyRunner in reply to SheffieldJane]

I feel great, actually!

[CrazyRunner]

He said it may take a couple of years to clear. Minimum one year. He did give a regimen but I can't remember exactly what it was. I'll be seeing him again on a regular basis, however

[Bcol]

Morning Crazy Runner, welcome to this forum. Like many of us you are suffering from a disease we had never heard of and this forum is probably the place to be for finding out more and getting guidance on its management. There will be others with far more knowledge and experience than me along later with information and advice. As 123-go some more information on your profile will be helpful to everyone. Looking at the FAQ's will give you a good start about PMR it's effect and likely length of duration.

[PMRpro Ambassador]

Do have a look at the FAQs post and the links from it. As you will see, little point just asking for tips in a single post -too much for you to be told and it will be dupicated. Making your questions more targeted as required will elict relevant advice.

healthunlocked.com/pmrgcauk...

[pmr_nikola]

If you plan to run again, do it with caution. PMR makes your muscles weaker and also will make connective tissue susceptible to injury. If you had surgery on your knee, you already have weak "link" and requires you to be extra careful. Not only the knee you had surgery, but also the other side, which was loaded with extra weight while you are recovering form surgery. If you have a chance, go thru rehabilitation to strengthen both knees. If not, try to do recovery by yourself following sensible program that targets knees , like this one at link:

mykneeexercise.org.au/

ask questions before you try... and good luck.

One more thing -keep in mind that prednisone dulls pain and you will miss symptoms of over-training, so be careful until you get down to 6-7mg dose.

[Sunnyday365]

Hi DadCueI'm a newbie - finally diagnosed after six months in May. Such a crazy disease to understand and manage - especially with the prednisone. I'm replying to you because I thought I saw a reply by you that explained all of the emotions and issues surrounding PMR. I am looking for something to give my husband to read as he thinks that I'm on Pred and moving around so everything is ok. Not his fault but I thought giving him something from this site to read about the emotions, prednisone management, frustration and changing pain levels might help. If you posted something similar I'd love the link. Thanks for your time.

[Kendrew in reply to Sunnyday365]

Hi Sunnyday365,Welcome to the sight.

I've had PMR for just over 2yrs now and like yourself, encountered what's felt like scepticism and disbelief as to the severity of my condition and it's impact on my life... from not just my husband, but other family members and friends too.

I understand their inability to comprehend this disease though, as my father had it and I couldn't understand what all the fuss was about either.......he looked ok, he could go out & about most of the time and surely the meds were making him better! Only now, as a sufferer myself, do I understand how challenging his condition really was and that there was so much more other 'stuff' going on that lay beneath the surface!!

PMR is almost invisible to others so because there's often nothing physically to see, it's often assumed we're well. You can't always directly see pain though, nor fatigue, sluggishness, depression, and many of the other unpleasant symptoms & side effects often experienced.... so we're often - and incorrectly - deemed to be 'doing ok'!!

PMR changes your life completely though and all the enthusiasm, determination and dedication I used to put into the gym and keeping fit is now focused on simply managing the PMR and the side effects of my meds. I may look ok but I certainly don't always feel ok.

It's also assumed that the passing of time should facilitate your recovery. This is true for so many other health issues but unfortunately, not for PMR.....this is a chronic condition that can, and does frequently go into remission only to relapse again. Steroids don't cure PMR...they only reduce the inflammation, thus relieving the symptoms. The condition is still active beneath the surface.

PMR requires a period of adjustment as we come to terms with our new 'normal'. We often mourn what feels like the loss of our 'old self' as those normal everyday tasks we used to execute without a second thought become huge mountains to conquer. For me, being able to sustain a short walk for more than 10mins was a huge triumph when some days I didn't even have the energy to hold up my hairdryer!

Steroids come with their own complications. They can be a godsend in relieving the aches & pains but for some they also bring unpleasant side effects. Most can be 'managed' but as to how, well that will depend on each individual person.

There's so much more I could say but it's probably best you look through FAQ's as already suggested....and maybe get hubby to read some of the appropriate 'posts' and commentary too??

When first diagnosed, it can be a bewildering and scary time but as you discover and learn more about your condition you'll begin to feel more reassured and confident about how to manage it, and less overwhelmed by the uncertainty of it all.

PMR is definitely not without it's challenges but there's lots of reliable advice and support here and most things can be sorted one way or another.

I hope that's helped a little. Sorry if it's a little long!

[Sunnyday365 in reply to Kendrew]

Thank you so much Kendrew. Exactly what I needed. This site is such a lifesaver!

[Noosat]

Hello from Texas Hill country. Welcome to avery informative helpful group of people

[TravelingGal]

Welcome to the club that know one chose. As a former runner, I relate to your story. The prednisone has helped me with pain and inflammation, but the fatigue continues! I wear out easily, and at first was very worried about myself—thinking Lupus or some other condition along with the PMR. This forum has helped me understand PMR better and know questions to ask my rheumatologist. Good luck with your journey…there is hopefully a return to normalcy eventually!

[CrazyRunner]

Wow! Lots of good info here. Right now I am not even trying to run, but I have taken short walks of around a mile to a mile and a half. I already take a top drawer supplement and added vit D. I'm retired faculty at the nearby university (Kennesaw State) and I have access to the fitness center. Stationary bikes plus weights are available. I'll be spending more time there than on the trails for the time being. Thank you all for your helpful comments.