My PMR Journey

I was reading another post and helenemiles and Eileen were talking about pain in their big toes. Since I've never posted before and those comments caught my attention, I thought this might be a good time to share my personal PMR journey. I've read so many of yours and they've helped me, so maybe mine will help someone else know they aren't alone either. Speaking of toes, my first symptom (in hindsight, because at the time I couldn't figure out what was going on), was sudden onset severe pain in the base joint of my left big toe. That lasted a few weeks, and during that time, while out on a walk, my left calf cramped up. At least I thought it was a cramp, but it never went away. After 3 months & numerous trips to the doctor, and not finding out what it was, it eased up. Then my big toe joint suddenly started hurting again. I thought I might have gout or something, but x-rays & blood tests for gout showed nothing.  Then I blew out a disk in my back and ended up have a fusion a year ago in January. After surgery I felt great and was doing wonderfully on my rehab, even walking 3 miles a day 5 wks post-op. Then I went to bed one night feeling fine, and woke up not fine. The pain in my calf muscle was back and way worse than before. Then my neck, left shoulder and muscles in my upper left arm started to hurt. I felt like I was falling apart. My back surgeon suspected a blood clot, but an ultrasound showed it was okay. I had MRS's on my back, hip, and knee and an EMG on my back and leg and everything came back negative. I was beginning to think I was going nuts. I started PT and nothing there helped either. My PT found a big knot in my calf that would NOT go away no matter what. He and another PT he consulted with thought it sounded like a myofascial problem, but it wouldn't respond to anything & it was horribly painful. Also during all this, I started seeing my chiropractor for my neck & he couldn’t tell if this was coming from my shoulder or neck, as both seemed to be involved and all the muscles in both were spasmed up. With chiropractic they gradually felt better, but still came and went some. Those didn’t hurt as bad as my calf, so that was my first priority to treat. Then suddenly, last July, the pain in my calf slowly diminished and went away over the course of a few days, but at the same time I developed bilateral groin pain. That became so severe that I couldn't even stand to wear underwear because even the touch of the elastic was more than I could bear. Then the pain starting in my upper leg muscles too. I ended up in Urgent Care because I couldn't stand the pain, and they had no idea what was wrong with me. I think they were trying to find anything to do for me, so they put me on a Medrol dose pack thinking it was probably still stemming from my back. By the next morning I was feeling pretty good and I had a good 4 days, then it all started back in again and in addition, my hips and buttock muscles were also stiff and sore. Then about a week later my right shoulder joint started to hurt and then the upper arm muscles too. I was noticing that I hurt more when I went to bed and for the first couple of hours after I got up. I had NO appetite, and I would spend most of my nights up walking the house because it hurt too much to go to bed. During all this, I tried to do my normal daily walk, but I was kind of shuffling because I hurt so much, and I caught my toe on a root and twisted my left knee and tore my medial meniscus. This was just about more than I could take. I'm a VERY active and physically fit 58 yr. old woman and I felt like my life was crashing in on me. I was so sore everywhere that I scheduled a therapeutic massage. Normally I LOVE a deep massage, but I could hardly stand to have him touch my muscles and I don’t think there was a spot on my body that didn’t hurt. He couldn’t even figure out why I was such a mess, but he worked on me for 2 hrs. and had me come back for two more massages. Each time I came in, I was in just as bad of shape as the time before & it was horribly painful.  I finally gave up and decided that they weren’t going to help me. I didn’t know what to do to get relief at that point because I didn’t know what was wrong and if I told anyone I was sure they would think I was a crazy hypochondriac . A few days before my pre-op appt to have my knee repaired, I was sitting at home one evening and I suddenly felt like I was getting sick, kind of nauseated, chills & fever, and then the weirdest thing I've ever felt in my life happened. The pain in my right shoulder migrated across my collar bone and into my left shoulder too. I had no idea what was happening to me, but it was very scary. I tried to go to bed, but I couldn't lay down for more than a few minutes due to pain, and when I tried to get up, my arms wouldn't work and it would take me several minutes to be able to even roll over and try to get up. Again, I walked the floors all night. Through all this I literally went for 2 wks with no sleep, I lost 10 lbs., and I looked like death. My pre-op appt for my knee surgery was the next morning, and I told my surgeon I didn't know what was wrong with me and he suggested I make an appt with my GP as it sounded like some kind of myalgia to him. By the time I left his office, I could hardly lift my arms to drive my car. I stopped at my GP's office on the way home and made an appt for the next afternoon. That evening I got up from our couch to go to bed and I couldn't move my arms more than 6 inches from my body. I couldn't even get undressed to go to bed, but I couldn't lay down anyway. Finally at 3 AM I woke my husband up and had him take me to the ER as I was getting really scared. Even after telling all this to the ER doctor, he thought I had rotator cuff syndrome in my right arm and had overcompensated and got my left one involved too. Duh!!!!  I told him I was sure that wasn't it because I was running a low grade fever too for the last few days, and I’d done nothing to hurt my shoulder. Regardless, he still thought that was it. He couldn't give me any anti-inflammatories due to my upcoming surgery, so he gave me a steroid injection and sent me home still in pain. I was sooo upset!  But wait, after about an hour I realized my shoulders didn't hurt as much and my groin pain was less. Within 4 hours, I couldn't tell anything had been wrong with me. At this point, I had never even heard of PMR, so this didn't make sense to me at all. I went to my doctor that afternoon & I told him I actually felt fine right then, but told him about what was happening. He had some labs drawn and called me the next day to tell me my sed rate was 53. (When my groin pain was at its worst, my sed rate was only 9). He said to come in as soon as I felt up to it after my surgery and we would discuss it. Since all my symptoms were returning right before my meniscus repair, I made sure I was in his office 3 days after surgery to see what in the heck was going on. I had Googled high sed rate to see what that meant and saw PMR as one of the things causing it and looked it up and discovered it was me, so I had a little idea of what the diagnosis was going to be. He started me on 20 mgs Pred on a Friday and I was in to a rheumy the next Tuesday. I didn't respond real well to the 20 mg, so he gave me an injection that day to give me a boost and said to call in 3 days. I was still feeling muscle and joint pain, so be bumped me up to 40 mg and I got immediate relief. Of course, I got every Pred side effect like a VERY upset stomach, my eyes went goofy on me, etc. Got into the eye doctor immediately to make sure we saw no sign of GCA, and have been back again because the eye focusing stuff has continued to be a problem, but now that my pred dose has gone down numerous times, some of that stuff has eased. From about the time my shoulders were affected, I developed the most crushing fatigue I've ever felt. I think I've taken about 2 naps in my lifetime, and all I could do was lay in a lounge chair with my body feeling like a lead weight, and sleep. Luckily, this has eased too and I can at least go for my daily walks, but I learned very quickly that a day of activity means I'm good for nothing the next day. I've always been a night owl too, and now if I don't get things done by about 3 PM, it's not going to get done that day. My social life has definitely gone to pot too, since almost all social functions are at night and by then I don't even want to go. This whole saga started 18 mos. ago and my diagnosis was 7 1/2 months ago. I still have problems that ebb and flow, but I'm learning to deal with it and just trying to be happy I don't have cancer or the MS that my younger sister died from. Having some pain issues in my neck now and in the muscles between my neck and shoulder. I've been listening to all of you and found a Bowen therapist here and have had two sessions. No great results yet, but the muscles have loosened up some.   Sorry to be so long-winded, but I've been lurking and just reading everything posted for a while to get familiar with how this forum works. You have been my best source of information through this whole ordeal and I'm so thankful I found you, since I don't know a soul with PMR. It would be a very lonely journey without reading post and saying "My body is doing that too!!"

7 likes, 48 replies