I'm so happy I found you all. I have spent the last two days reading through all the posts. I was recently diagnosed with PMR which was something I had never even heard of before.
About 2 years ago when I was 52, I went for my usual walk and after about a mile I began having extreme pain in my hips and had to sit down and call my husband to pick me up. I normally walked 2-6 miles per day without any problem. I was diagnosed with bursitis and was told to take Tylenol. My PCP didn't do any tests of any kind so I went to an orthopedic doctor (my ins doesn't require a referral). He again asked about my symptoms and confirmed the bursitis. At the time I was having off and on pain in my right shoulder but just thought I had strained it a bit too much and it would go away. Neither doctor asked me any questions about pain in other parts of my body and I never put the two together myself.
Over the next two years the pain kept getting worse and worse. My walks became a thing of the past and I put on about 30 pounds. The bursitis never went away I was also diagnosed with sciatica. When i again told my PCP that I was feeling achy all over and the aching pain was so severe I could not sleep at night she gave me a prescription for 20 vicodin pills with no refill, and again no tests.
My pain has ways been the worst at night (I could totally identify with the description "The Torture Bed"). I take prilosec for a hiatal hernia and I am not supposed to take Ibuprofen or Aspirin but I had to anyway, it was my only option. Tylenol wasn't helping much and the Ibuprofen helped a little better. I would switch back and forth from Ibuprofen to Tylenol PM to get a few hours of sleep each night. The vicodin didn't last long but it let me actually sleep without pain for a while. My little finger on my right hand gets very sore and looks like it has some arthitic growth and when I sit for a while my hands get very stiff and sore and my feet feel swollen and sore when I get up.
My husband had a heart attack in March of this year and is still suffering with heart issues. I think the stress and extra workload made my pain even worse. We have a second level condo and I am now responsible for carrying anything over 5 pounds and any chores that require manual labor. Just standing in the kitchen preparing food for a half an hour makes my hips burn and my legs and shoulders ache.
I ran into an old freind who has Fibromyalgia about a month ago and she recommended that I see her Internal Medicine Physician. I did and after we talked for a while and she began ordering tests, she said "I hope you don't have PMR!"
When the tests were back they showed a sed rate of 70, and an MRI showed mild to moderate spinal stenosis, but not enough to be causing the sciatica. My vitamin B12 was on the low side so she started me on shots for that and wanted me to take 5 mg of prednisone to start. This was all so new to me that I told her I'd take the pred as a diagnostic tool temporarily. I took 5 mg for a few days and still couldn't sleep at night for the pain. I increased it by taking 5 at night also and the pain went completely away. It was almost surreal! I stoped taking it after 7 days and the pain came back immediately. I went in to let the doctor know the results of the Pred experiment she confirmed the PMR and told me that it would be best for me to take the Pred for a while but it was my decision. I agreed to try it for a while and see what happens so she gave me a 36 day prescription and wants to see me again at the end of 30 days. The Pred scares me but I filled the prescription. I then kept it in my purse for a week before I decided that I had no choice but to take it.
Today is my first day. I took 10 mg this morning at 9 am and it is now 12 hours later. I've been sitting here typing for about an hour and not feeling too bad. Last night I could go online for about 5-10 minutes and then I had to go rest.
I have to say that for sometime now I have felt like my life is over. My company had a big lay off in Feb and I have not been able to put a lot of focussed effort in finding a new job. When I go to an interview I make sure I don't go too early because I don't want anyone to see how hard it is for me to get up and walk after sitting for a few minutes. I have been very slow at taking tests, seems like my concentration was also affected. My unemployment ends the first of October so I have no choice but to go back to work. I think that's the main reason I'm taking the Prednisone. It's a survival thing. I do worry that I'm opening up Pandora's Box but I have no choice but to see what it holds for me.
I have truly appreciated reading all your posts. They have helped me know that there are a lot of people out there who are experiencing the same things. I wish the best to you all and although I'm sorry you are here, I am also thankful that you are here...
God bless you, MrsDuck, and the doctor that finally diagnosed the PMR.
It's simple, but they just don't get it. Some doctors have never, even heard of it. I've had it for over two years been diagnosed and treated for 1 1/2 yrs. I can completely relate to your fear of the future and what's happening to you. You will finally accept it, and move on... with some pain, but never like the first unless you have "flare".
We all have a love hate /relationship with prednisone. My first observaton is: Sounds like you have a great doctor. Don't evey play with the prednisone dosage yourself (like I do sometimes). If you cut too much too fast, it will come back with a vengence. If you take too much your body will never learn to produce it's own stuff. My rhuemy says we are "fooling our bodies into making it's own". Last advice, I promise, if this doctor tries to take you off prednisone before a year is up, go to a rhuemy.
Welcome and and love to you. You will make some great friends on this forum, and they are so helpful when you need to know something or when you get so depressed from the pain and fatigue. They will pray for you. Hey, cyberprayers work. They may even start closer to heaven. Have a good weekend everyone.
Welcome Mrsoldduck,Thanks, Betsy and Georgiana!
Today is day 2 on Pred and I'm feeling quite a bit better. I seem to be having more hot flashes, not sure if the pred is making me warmer...or if it's just the menopause! My hip bursitis was pretty bad last nite but I'm hoping it will calm down soon. On a positive note I was actually able to go shopping for baby shower gifts today. I went to about 5 stores and walked for hours. We have a new grand baby on the way and a shower to attend next weekend.
I did make an appointment with a rheumy last week. I will see her on September 4th. I want to keep my Internal Med Doc but I always believe in seeing a specialist once you know what KIND of specialist to see. I had thought the orthopedist was the right one....that was a big mistake
This group seems to sincerely enjoy talking to each other and I look forward to reading the posts. You both lead very interesting lives and in sharing your good days and bad days you provide a personal, human perspective on this thing called PMR. You can't beat personal experience, no way, no how...
You take care and thanks so much for taking me in.
Kathy
Kathy, I am most always dripping wet with presperation on my head and face, but nowhere else. I believe it's the prednisone. Menopause on top of that? You may very well just melt into a wet blob on the floor, child!
I'm glad you're seeing a rheumy, anyhow. It's all we can do. I hope you continue to improve as you adjust to this extremely frustrating interruption in your life that few people have ever heard of. Even lots of doctors. Love
Kathy,Thanks for the heads up! I guess I need to start putting things together. I'll make sure I bring it to the attention of my rheumy. If you all hadn't said anything I probably wouldn't have.
Thanks again!!!!!
Kathy
Welcome Mrsoldduck, you'll get advice from these gals, just wanted to mention that I take Aleve and find it helps me quite a bit, was on pred. but not in as much pain lately, BUT, i'm not counting my chickens too early in case I jinx myself..I was so happy to hear from you all. I've never been on a forum or message board before so I didn't know what to expect. Everyone has been so kind!
Today is day 5 on Pred. I've been having bad headaches and my eyes feel like I just woke up all the time. I guess you would describe it as pressure? I've been going thru menopause so I had hot flashes already but now they are pretty constant. Most importantly the pain has been greatly reduced, I have actually slept through a whole night without pain medication.
I took some vicodin this evening because of the severe headache. I don't take it every day but what is strange is that if I take vicodin in the evening, I always feel much less stiff and sore in the morning. Maybe my muscles relax more while sleeping??? Not sure. I don't have an addictive personality other than food, but I feel guilty about the pain meds.
I'm so thankful to have finally figured out what is wrong with me and that this forum is here. I wish you all a speedy recovery....Take care all and have a wonderful day!
Kathy
Kathy, here I go again, Have you told your doctor about the hadaches??? IfThanks all for your concern. It is much welcomed! I called the doc today and she said if the headache comes back today to let her know immediately. She said it might be the Pred. So far today I'm headache free. She did set schedule some additional tests on Friday to see what's going on.
And yes...sleeping all night is something I missed dearly for a long, long time.
Thanks again!
Glad the headache is gone! Also very glad you listened to us worrywarts and
pgr555,
Did you start out lower on pred and then go up to 20 mg? If so what determines whether they increase it? Were you still having pain at the lower dose?
I hope you're feeling better soon. Should be a nice weekend depending on where you are.
Take care,
Kathy
Kathy,Thanks pgr,
That is helpful.
I'm not pain free but the pain isn't enough to keep me from sleeping now, which is miraculous in my book. I'm still using the vicodin every few days if I overdo it. I think I'll talk to my doc about it.
Take care! Kathy
Kathy, I was interested to read your history with "bursitis". This happened to me too, at the very beginning of all theis PMR stuff. I was being bothered with a really nasty pain quite specific in location on the side of my L hip, especially at night, for ages. Couldn't lie on that side at all, but it even hurt when I lay on the other side, couldn't sleep at all. Then it started in the R hip too. Doc did various flexion tests, asked questions etc and then said it was bursitis. Later I got the upper arm pain - in a way the upper arm pain was similar to the bursistis, ie very localised, but sort of jabbing, whereas the hip pain was a constant gnawing! All these pains disappear with pred, but are the first ones to return when I stop pred or lower the dose too much. Glad to hear you are getting some sleep. Although isn't it just so unfair, that once we get rid of the pain which stops us sleeping, the pred steps in and takes over as the thing to keep us awake!Hi All,
I saw my Rhemy this week and will continue on the Pred. The plan is for 6 months and depending on tests, start tapering down after that. I told her I'd like to stay on 10 mg and no more. It manages the pain well enough if I take it easy.
I really think if I started seeing hair on my face which already has rosacea (confirmed this week also) or that I'm growing baboon cheeks (my face is round enough already) I might panic and go off the pred totally. I can handle the sweating as long as I have a fan with me at all times.
She diagnosed my little finger with RA most likely. She said we'll watch it over time as see how it progresses. The Pred has helped and as long as I use an ergonomic keyboard and tracball mouse it's not too bad overall.
I've been having numbness in the same little finger and the finger next to it on a couple of occassions over the last two weeks and lots of headaches. The headaches made me concerned about GCA but she examined the muscles in the back of my neck and they are extremely sore going into my shoulder and down my arm. She recommended massage therapy for a while. She said my neck and shoulder muscles are extremely tight. I'm thinking duh....I was in pain for 2 years and nobody would listen to me. Of course I'm tense!
Well I'm done venting
Take care all and thanks for your support.
Kathy
Hi Kathy, The numbness you mentioned in the little finger and the one next to it.. I have this too. My GP touched a spot just above my elbow on the outside and the pain was instantly in the fingers. He said this was a fat deposit from our friend/foe MR. PRED.( Sorry guys but it must be male) Aparantely fat deposits in various areas are a side effect. Another few you are concerned about.. the peach fuzz on balooning cheeks. ... Only look in the mirror when shaving!!! or go have it all waxed off at a beauty/ugly shop!!! Especially the upper lip too!
Keep that fuzzy chin up, and you take care Too XX
Please do not panic and go off pred for these reasons and not without medical advice as you must go down slowly or you will become very ill if it is stopped abruptly. I am sure you know this .. but just making sure..
Briefly I have been on Pred for approx 20 months and will be still on 5mg until next April before I can start to taper. My Rheumy believes in tapering very slowly to avoid flares and so far so good. Still shaving, Gillett, face not so puffy lovely wrinkles coming back ( can't have it both ways) and flushes are reduced as well.
Dear Mrs Duck,
I had headaches and pressure behind the eye while I was taking pred. It was godawfull. I walked around with ice on top of my head every night. (I had the biopsy done for GCA but that was negative so we blame it on the pred.)
I found that an aleve before bed helped some.
I feel very bad for you that you have to deal with his but know that it goes away. I had it for 2 years and am completely cured. (also had pain and stiffness in my hands and wrists took plaquenel (an RA drug) for 2 weeks to get rid of that.
Hi Kathy