To all--
I was just wondering the average age of everyone here. Some people are wondering that because I'm approaching 50, but was 47 when diagnosed,that PMR could be an accurated diagnosis for me.
I know that a few of you are about my age.......do you all mind me asking?
Thanks,
Hopalong
Hi Hopalong,
Hope your hubby had a safe delivery trip. Anyway, my symptoms of PMR began at age 48, diagnosed at age 49 and am currently 50. We are among the age that typically do not get PMR yet. How we got so lucky I will never know.
Hope you have a great day!
Hello Hopalong, I am 55 diagnosed at 54, and probably had it for 4 months before diagnosis. Thought it was just problems with my back extending into my legs. G.P. put me on an anti inflammatory drug and a musculo-skeletal specialist said it was just tight muscles that he could fix with injections of an anaesthetic drug ang manipulation and exercise! He then said go on holidays and relax!!! Fortuneataly i had an appointmant booked with the Rheumologist for 2 days after our return. I was a mess and started on Prednisone then.
So far today pleased as I did 45 mins of my swim sqad but then stoped because just started to get those heavy feelings in my body.
Peaches
Hopalong Also My mum had PMR at 70, but mainly around her shoulders and upper body. PeachesThanks for all of your replies! I found an interesting site discussing the age of onset of PMR; will put in on a new topic, and I'm a bit confused as to how to take it. I had my husband read it, and since he was confused too, I knew it just wasn't me.............at least this time!!!
Hopalong
PS to JMBR.........thanks, my hubby did make it safely.......but now tomorrow is another story!Diagnosed at 58 - still am - have had it for 9 mos.
Hi
I am 66 and was diagnosed about 3 months ago - after waiting nearly 15 months for the doc to decide what I had. I had great trouble persuading him that I had muscle pain not spine trouble!!!
JaneB
I just joined. I was diagnosed just over a week ago and I'm 55. It started (noticeably) just over a month ago in my hips and thighs, and at first I just thought I'd been overdoing things (farm chores & dog walking). Went to the doctor 3 wks ago - first diagnosis was arthritis in my hips - ran across PMR when looking for arthritis info on the internet, and by that time my shoulders and upper arms were involved, so the light went on and I immediately went back to my doctor to confirm. Started prednisone just over a week ago - what a relief! I can put my socks on standing up again!
Ruth in B.C.
Thanks, Domino, JaneB and Ruth,
I appreciate your replying. I'm still wondering about this site I ran across which states the average age of onset is between 40 and 59. That is so unlike everything else which I have learned, stating the median age is 70. What do you think.....would you have time to check out the site and read the article; it's not too long; maybe it's a typo?
Glad to have you with us, TicketyBoo......it's the small things we take for granted; putting on socks again, that when we regain the ability to do them, make us smile;
JaneB,
I can totally relate to your frustration in waiting to come up with a diagnosis!
Domino, thanks for answering also. Are you on Prednisone?
Here's that link again, and I'll bump up the original post.
www.netdoctor.co.uk/diseases/facts/polymyalgia.htm
Let me know what you all think.
Smiles,
hopalong
Hi,
Like Hopalong I thought the average age of PMR was around 70 years, that is why I was so surprised when I was diagnosed at 49. I read the article, hopalong, and they did make it seem like the age was earlier. It does make one wonder because there are several of us that are younger that have PMR so maybe it isn't so rare or different that we do have it in our earlier years. I remember after my first dose of Prednisone, it was like a miracle had happened. Instant relief!! Welcome Ticketyboo! There are many very nice people to chat with here and it really does help to know there is someone that understands exactly how you feel.
Smiles to all,
hopalong
I read that site with interest, hopalong, and I also wonder if perhaps much of the medical community is working with out of date information on PMR, especially given it has been so hard for many sufferers to get a timely diagnosis. Also, that's the only site I've seen that mentions a possible connection with parvovirus, which seems to be an interesting link - a co-worker of mine told me about her horrifying experience with parvo some years ago. She said it started with symptoms similar to my PMR, but progressed much further and did not respond to corticosteroids.
Ruth in Beautiful British Columbia
Hmmmmmmmm, intersting about the parvo virus. I didn't pay too much attention to that, so I'll go back and re-read.
Thanks, Ruth!
hopalong
Hi Hopalong and all
I have just read the article and I seem to be one of the lucky ones. It only affects my upper back, shoulders (and arms when it was bad). As far as I can remember I didn't have any symptoms except horrendous pain. I feel a little hard done by as the only sympton I would have welcomed, lack of appetite, has passed me by!!!! I am having to control my eating which I find difficult as I love food. I don't drink or smoke so feel I am entitled to one vice. However, I too have cut out all snacking between meals. Also I serve my main meal on a small plate, i.e. a side plate. This has a psychological effect because the plate looks really full when in fact there is probably only about half the quantity I would have on an ordinary dinner plate.
Janeb
Yes, I thought the possible link (in some cases) with parvo was interesting. I've noticed some people on the forum mentioning how sore the bottom of their feet are, and that was one of the things that happened to her. Her fingers would cramp up painfully, and the soles of her feet were so sore she couldn't walk - she became completely incapacitated, and had young children at the time so it was hard for her to rest. I believe she also got a bad rash, and ultimately her doctor told her nothing short of complete bed rest would help until the virus ran its course.
Ruth
Wow, Janeb!
Are you disciplined, or what????
I have not had too many problems with the soles of my feet, but do have early signs of plantars faciitis.......spelling? I know people have that complaint with this dx. I'm supposed to do excercises for my tendons, because I have prolapsed arches, but forget!
Anyway, have any of you ever tried the foot insert, SUPERFEET? My ortho told me about them, and I found an REI mountaineering store or you can check with any mountaineering, outdoor type store who sell them to many hikers, etc. Just make sure who you work with knows what they are doing, as there are many types of SUPERFEET insoles, and you want the ones that will work for you. They also have custom ones which are about or . I paid for 'off the rack', but I was given instructions, and so forth! Also check with stores who specialize in selling shoes for people with foot problems...........just GOOGLE SUPERFEET and see what you come up with.........not sure if this will help, but worth a try?????
Good luck!
Hopalong
I turned 46 yesterday, and was diagnosed 3 months ago.Hi, I'm new here and I seem to be one of the youngest. I am 37, almost 38 and have been diagnosed with PMR. I haven't seen a rheumatologist yet but will be seeing one soon. My PMR affects my shoulders, back and upper arms the most, stiff and sore. I also have the temporal headache on and off. I am very tired and have lost my appetite. I was put on 50mg of Prednisone for 5 days which relieved my symptoms BUT made me feel like I was in outer space. I'm afraid to take them on a regular basis, but may have to because I'm becoming an invalid. I have 3 children at home, so I really need to get feeling better. I'm also have weird sensations of the palms of my hands being numb and my legs and feet tingling. I'm thinking I should get my B12 level tested. Anyone else have these symptoms?Dear mrstrailside, I am 55 diagnosed in Dec05 and it seems that the tingling in my feet and lower legs is worse as the PMR is not managed well. Sometimes in my hands, but apart from having an MRI, the GP just said it is the PMR getting worse as I lowered the prednisone. The tingling is worse when I stop walking or lie down or sit, as now it is in my feet. I have not really had a satisfactory explanation. I do hope you have some family back up because it is just so important to take care of yourself and just rest when you are tired and then start up again. Big Hugs and do not be frightened to ask for help Peaches
Thank you peaches for your response. It makes me feel better that I'm not alone in these symptoms. I haven't found much info. on the tingling. I am exactly like you in that the tingling is really bad after walking and it seems worse when I sit or lie down. Sometimes I think I am just more conscious of it when I am still. I'm wondering about the numbness in my hands (mostly in the palms of my hands and in my pinkies), also my outer toes on both of my feet feel like they are asleep off and on. When I was on the prednisone the numbness went away, which makes my Dr. think it's all associated with the PMR. I do have a wonderful family and many friends close by that support me. They all just wish that i could feel better and SO DO I! I'm hoping as the warmer weather approaches that I will have better days. Has anyone noticed if the weather affects their symptoms?I know this is an old thread, but I have to chime in... I'm 33, and got diagnosed last October. I'd had PMR for over a year after getting mono and pneumonia. Horrible, horrible experience.
I am so very glad to find this forum. I was diagnoised with PMR today, June 7, 2006. I was very surprised to get this dx. I went in to see my rheumatologist last Thursday, June 1, 06, for a regular check up for my oestoarthritis. I expected to be told the OA was getting worse, get new prescriptions for the meds I was taking and told to come back in 3 months. Was I ever surprised when the dr told me he wanted to do blood work, x-rays and a bone denisty test
I was surprised when the appt was on Fri afternoon. The surgeon told me the results would be back Mon June 12. So I was really shocked when my rheumy called this morning with the dx. Last Thurs he put me on 45 mg Prednisone daily. This morning he cut the dose to 30 mg daily. This is all so new to me. I was 70 years old this the past April and have had so much pain in my feet, legs, hips, shoulders, neck, arms for the last 2 years. I have also had temporal headaches. I just thought it was all part of the OA. I had no idea it might be something else. I'v learned a lot the last few days but just reading something is not at all like finding a board with others who have the same dx as I do. Hi, I am writing here for my mother (she doesn't have internet access). She is wondering if there might be any connection between a stressful lifestyle and PMR. Can any of you please shed some light on this? Thanks, Hello everyone - my mother-in-law was diagnosed with PMR a few months after I married her son. That was two years ago - and the symptoms seem to have gotten worse, not better, even with steriods, narcotics, and all sorts of other medications. So - I'm asking for advice!!! It's become a very frustating family situation - I want to be a sympathetic and compassionate daughter-in-law, but she now does nothing but sleep all day long every day. No job, no hobbies, no church activities, no social calls besides visiting her elderly parents. She's now on depression medication as well as PMR treatment - but could any of you suggest a tactful way that my husband could encourage her to exercise even a little (which from what I've read would help her overall to feel better)? Is there anything to be worried about that the symptoms don't seem to be controlled or alleviated? Please, any advice!!! We're going for a two week visit soon, and I would love to understand her condition better. Thanks!!! HI All newbie here! I too was 49. What is it about being 49/?! Had it for 2 years. Was on pred for that long. 2.5 good years. Now it is slowly creaping up on me again although the stiffness in my arms and legs are less than before. Now however my fingers and wrists are much more involved than before. anyone want to talk email me Marianne_erikson@yahoo.com Hello Hopalong, I was diagnosed in May this year after suffering pain and stiffness since Feb. I am 52. My symptons started in my legs, thinking it was an exercise induced injury....pilates reformer. I still think that started it. I had hip xrays, spine MRI, phyiscal therapy, even saw a chiro. Once I started on the pred, I had immediatel relief. I, too, can now put on shoes and socks and pick up items from the floor, bend and the knees to get down to the floor....and not cry when getting out of bed. I believe the only side effects I have from pred is sweating and a little bit of an increased appetite. I am down to 12. 5 mg a day, and hoping to taper down to 10 as schedule....if CRP is down. If this is the only issue that I have to deal with in my life, I will be grateful....not that I like the pain and stiffness and having to deal with prednisone, but this will burn itself out.... This is a great board and I get lots of insight and information... Thanks to all of you, Janet Hello! I'm a newbie here. I'm from Sweden. Very nice to meet you all!
I was diagnosed at the age of 45 but had symptoms for about six months before, already when I was 44. I'm 46 now and have had it for about 20 months. I'm on prednisone, 5 mg, but the last taper down is not working that well. I'm quite stiff and the pain has increased. The CRP is 18 which is ok but higher than it used to be - I use to have 10. Thank you,
.....................Georgiana
I am 54, was diagnosed about 3 mos ago. I think I have had symptoms for at least 2 years. I have had the burning feet, also hands and elbows. Had the pain in shoulders, neck, hips, knees. etc. I actually have all the tender spots for fibro, but since the blood sed is high (orig. over 70) they determined PMR. Your m-in-law probably really does feel that bad. There are days when I can barely put one foot in front of the other and some days are not too bad. The PMR is bad enough, and the side effects from the pred. can be debilitating in themselves. This is not an easy drug to take. It sounds like she does need some help managing her symptoms though. Pred. affects people very differently. For some it is a miracle drug with no side effects, for others it is a nightmare. It just absolutely kills my nerves. I shake so bad can hardly write my name. I take .5-1 mg of Ativan for my nerves twice a day, in a.m. and then right after lunch. I also get terrible headaches, which I take 2 ultracet and usually takes the edge off. I also have ambien to help me sleep because once the ativan wears off (late afternoon) there is no way I am going to sleep. I have to take the Ativan as soon as I am aware it is wearing off, or will get the headache and nothing will get rid of it. I avoid caffiene religiously, as a sip of coffee will give me a roaring headache. What gets me too, is my GP doesn't like giving me the Ativan or the ultracet, but I have to work a 40 hr. week job and no way can I work as sick as I get without it. So, you see, even some Drs. don't realize how bad the side effects and illness affect your every day life. There are prednisone forums out there too, read up on those and you will realize why some people call it a monster. I have a 78 year old aunt, has been on pred. over a yr. Down to 2 mg every other day, still kills her nerves. I also have a friend whose father in law says it is a miracle drug for him and absolutely no side effects. You may want to write down your m-in-laws probs and go with her to the Dr. and let him know how bad she feels and try to get her meds. adjusted to something that will let her live a halfway normal life. It will help her to know that you take it seriously and hopefully you can get some real help for her. Hello, Hopalong!
In case you're still tallying the ages, I was 52 when
diagnosed, and had had the symptoms for about a year
before confirmation of PMR. Aside from the weight gain
(I was so hungry all the time, and gave in to it,
gaining 36 pounds in less than a year), prednisone had
been a godsend for me. My symptoms started coming back
when I got down to 8 mg. I think I tapered too quickly
after being it on it for a year, and the symptoms are
back. My rheumy said I wasn't on prednisone long
enough, but could understand why the previous rheumy
took me off it - because of the weight gain. I have had
this for almost 5 years now.('') I keep waiting
for it to burn itself out, but no such luck so far. I
will have my sed rate checked again this Friday, and
will probably get started on prednisone again. Looking
forward to being able to have that freedom of movement
that the prednisone gives me.
Take care.
Reni
Inger
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