Does my case of potential PMR seem abnormal?
Posted , 16 users are following.
Hello all,
Really glad to have found this place and be able to identify with others who may be potentially fighting the same battle as I currently am. I say "potentially" because the jury is still out on what I actually have. Let me preface by saying I am a 41-year-old male, so don't necessarily fit the conventional description, although I have seen examples of younger cases.
Overall summary goes like this:
I started noticing in April that I was getting some irritation in my right shoulder when working out. I was unable to perform certain exercises without considerable pain in the shoulder joint area, and chalked it up to overuse and needing to take a breather from lifts that would impact that region.
About 3 weeks to a month later, I was watching a concert and had my neck craned in an uncomfortable position for much of it. I woke up the next morning with heavy stiffness in my SCM muscles to the point where I was having difficulty turning my head side to side.
After approximately a week of this stiffness not subsiding and moving to other areas of the neck, I went to the doctor and was prescribed some naproxen and muscle relaxants, which seemed to mildly reduce the symptoms, but the neck tightness would never completely go away -- the trend being that it was always worse in the mornings, would subside somewhat during the day, and then return in the evenings. I kept thinking this was a case of the neck simply needing more time to recover, but then started noticing a similar stiffness trend in other areas -- namely the back of my left knee and hamstring muscles, again always exacerbated in the mornings and evenings.
From there, my other shoulder started showing symptoms of pain to where I can't abduct my left arm across my chest. Then eventually some stiffness and tenderness in the rear delt region on each side. Finally my right wrist and base of my hand have had "flares" to where it's difficult to even turn a doorknob or lift anything of any substantial weight.
On the advice of my wife I did some light Child's Pose stretches in order to stretch out the muscle tissues a couple of weeks back and the following morning my right knee was swollen and tight, and has remained that way since to varying degrees.
If I sit down for any extended period of time, my legs will feel like stone and it will take time for them to wake up. Have had evenings with night sweats, and occasionally nausea. Also have had bouts of major fatigue and certainly a downturn in overall mood.
Blood tests show "slightly elevated" amounts of CRP and ESD. Negative for rheumatoid and other markers. I have had no swelling in my hand joints, or feet, no redness or nodules. Everything seems to be "proximal" and not "distal" at this point, At this time I've been seeing the nurse practitioner since my GP has been unavailable due to being on the longest goddamn vacation I have ever witnessed, lol. She believes it may be PMR, but needs to get authorization from him to start prednisone. Hopefully I will know within the next week. I've also been referred to a Rheumy but that will likely take a few months. If this level of health care sounds woefully inadequate, keep in mind this is in very rural Canada where it's a challenge even getting family doctor. I'm currently on a dosage of between 750-1000 mg of Naproxen and that does seem to be provding some symptom relief, although not completely.
I guess what I'm wondering is: Do these behaviors sound like PMR, and one other thing I keep reading about is how "PMR pain is different".... I wish someone could expand upon that. For me, if I stay still, I currently have no aches -- it's only when I attempt to move that the pain kicks in.
Anyways, sorry for the really long rant. I just needed to get all this off of my chest, I think, and get some feedback. I can see where RA may not be completely excluded from the diagnosis but if I'm being honest, based on outcomes I think I would be much happier if it was PMR. Thanks for listening!
0 likes, 27 replies
Anhaga jonnybeige
Posted
There is another possibility as you are in Canada where Lyme disease appears to becoming really common. Try to get tested for that, because it can present with PMR-type symptoms. You don't need to have had one of those bullseye rashes to confirm exposure. If it is Lyme your treatment protocol would be completely different from PMR treatment. Unfortunately we are apparently not always getting the best version of testing so confirming Lyme can also be a conundrum, but it is definitely one of the things which nowadays should be ruled out when doing the differential diagnosis workup. Especially as you are in rural Canada where Lyme can be transmitted quite easily these days, unfortunately.
jonnybeige Anhaga
Posted
Thanks so much for the input! Funny you should mention that, I also plan to have my blood work checked for Hypothyroid and Lyme disease for the differential diagnosis. You are right on the money about difficulties in diagnosing Lyme disease -- I've heard more than a few horror stories about that.
Silver49 jonnybeige
Posted
I have a few blood tests away and checks for thyroid and Lyme disease are 2 of them. I know of someone who wasn't diagnosed for ages. I have been off Pred for around 2 months now. Hope to have some of the results this week. Had a very thorough check by my GP recently. I was very impressed as it's the first time I have seen him.
Mrs_Hobbles jonnybeige
Posted
With regards ti the blood test, take note of what I mentioned in previous message about the White Blood Count, def worth keep an eye to, as if WBC raised plus ESR and CRP would def indicate an infection, but I think with Lyme it can be normal or high, again nothing concrete, but I do recall knee joints being affected with Lyme,. Should def get a specific test, look up tests in Germany, seems to be the gold standard!
EileenH jonnybeige
Posted
Sounds PMR-ish. But given your age and relief with Naproxen - has anyone thought of ankylosing spondylitis? It can present very like PMR. But really - a trial of a week or two of moderate dose pred won't do anyone any harm and provide some evidence and possibly relief for you. Here anyone on vacation has to have locum cover - no excuses ...
jonnybeige EileenH
Posted
Thanks for the suggestion Eileen! I will take that into consideration. It seems as though AS is mostly symptomatic in the SI joints, and the lower back is one of the few areas for me that actually hasn't been bothered through all of this. But honestly it's all so confusing -- PMR, RA, AS, they all have heavily overlapping symptoms, and they all have the classic fever, nausea, fatigue markers as well.
The most recent blood test which was done this week was tested for Lyme and thyroid, along with another round of ESR and CRP. Really hoping after the blood test results are back that I get the nod to try out the pred this week to see how effective it is.
Anhaga jonnybeige
Posted
I hope you get a definitive answer. Please let us know. It's good that they are holding off on prescribing pred until Lyme is ruled out as you need your immune system to be up and running if it is Lyme (which is treated with antibiotics).
bob03667 jonnybeige
Posted
Eileen,
I know this site is not to be used for direct contact but I have been a contributing editor of the Academy of Life Underwriting's publication "On The Risk". It is read by literally every Home Office Underwriter and Medical Director in the U.S. and in many other countries.
I wondered if you would be interested in co-authoring an article on polymyalgia rheumatica and GCA. With permission of webmaster here on this site, we could hopefully connect.
EileenH bob03667
Posted
Why not? Anything that will raise the profile of PMR and GCA. Not sure about the procedure here - but the private messaging is secure and person to person unless a recipient reports it. It would have to be something serious for me to report a contact - except when they are messaging me because they have a technical problem!!
bob03667 EileenH
Posted
How do you do private messaging.
EileenH bob03667
Posted
Click on the envelope below the name on a post by the person you want to message. Then it is just like posting as a thread except only the person it is addressed to can see it.
When you get a reply you will get a notification of a message by email and it will also appear as a red dot next to Messages at the top right of the screen if you are using a computer. Not sure where/how it appears on a phone.
b17941 jonnybeige
Posted
Hey Jonny,
Also in Canada.
Went through PMR for ~18 months ending about 5 years ago. I was 48 at the time.
My initial symptoms were similar to yours. very tight hamstrings, then shoulders and neck, night sweats, bit of fever.
My story:
My GP immediately suspected PMR. Tests for everything else were negative, but CRP was around 12 if i I recall correctly. Was referred to a rheumatologist, and waited about 6 months to see him. He would not confirm diagnosis since I was not yet 50 yrs old - he had no explanation - apparently better left unsolved. I did continue to keep appts with rheumatologist, and over the next year and took ibuprofen - starting around 1000mg per day (which I took 400 at around 2am (following pred-related advice on this site) and the rest during the day. That at least allowed me to get through the day.CRP dropped in a linear fashion over the next year until I was symptom-free.
Unfortunately over the last few weeks I am experiencing pain/stiffness again in my thighs ( and one shoulder, knowing how it feels from the past, so I fear it may be back (though if it is it seems to be coming on slower, and hopefully less sever). For the last four/five years, when I was having a bad day, I would think "things aren't so bad, at least I don't have PMR" I will be setting a up a doctor appt soon to get test and see where inflammation markers are at.
Best of luck.