Waiting And Miserable
Posted , 13 users are following.
Hi Everyone. I am waiting for my follow-up appointment with a rheumatologist on Thursday. She thinks I have PMR but wanted to rule out a couple of other things. They did bloodwork and I went and had x-rays.
My story is that last September I had a total abdominal hysterectomy. Weeks later my hips and legs hurt so bad... I told the ob/gyn and his response was "Well it's nothing we did." So at first I thought all of the aching was due to being taken off estrogen (Prempro) but fast forward to 9 months later and here I am still hurting, my hips, thighs, ankles and feet and also shoulders to a lesser extent, unless I try to move them in certain directions. @@
I work full time which entails riding a bus and train, and sitting all day getting stiffer and stiffer. When I get up in the morning I have to go down the stairs sideways and flat footed. My weekends are spent trying to recuperate from the work week. Meanwhile my house is a mess and I'm struggling to get things done.
I am 61 and before this I was literally running up and down stairs taking care of my Mom. Now I couldn't run if I had to.
The rheumatologist said that the foot and ankle pain isn't very typical of PMR. Also, instead of losing weight, I have gained. Has anyone else had the foot and ankle pain? Or gained weight instead of lost? Also it feels like this awful aching is traveling to my calves and other areas.
I woke up this morning feeling really down. It's beautiful outside and I feel like I can't move enough to do anything. I feel like I've wasted 9 months of my life trying to feel better.
Thanks for listening. I guess on Thursday I'll find out if she's making this diagnosis or not.
0 likes, 55 replies
kate50809 pmarie
Posted
I took 30mg prednisolone on the first morning I was prescribed them and woke up during that night thinking 'I have no pain, anywhere'!
The way my GP managed things was a bit erratic so it didn't continue - but hopefully you will get the same pain relief.
It is so awful the things doctors put on sick notes. Some seem to have no idea!
If it is PMR steroids work like magic.
pmarie kate50809
Posted
Hi Kait, Im hoping to be able to think the same thing! I took the first dose about 2.5 hours ago so I'm crossing my fingers and anything else I can still move well enough to cross. It's great that there is actually something that works so well for PMR.
Anhaga pmarie
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Kdemers Anhaga
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kate50809 pmarie
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pmarie kate50809
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Thanks Kate. I posted a minute or two ago on how it's going so far.
pmarie
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I'm having wifi problems and am going to have to call Verizon, so if I don't post, that's why. It won't stay on. Ugh.
Anyway, today was Day 1 with the 15mg prednisone. I took it around 7:00am this morning, and I am not 100% sure, but I do believe that somewhere between 2:00 and 3:00pm I felt a little better. And not as "draggy." Now I've thought before that I felt better when using CBD oil but it was short-lived so I'm really hoping this is the start of something good!! I'm trying to not get too excited because if the pred doesn't help me I'm going to do a complete nosedive. I have felt like utter crap (sorry) for the last year starting with the lead-up to the hysterectomy and I realllllllllllllllllly want this awfulness to go away!
Anyway to sum it up, after Day 1 I am very cautiously optimistic.
Going to post this before the internet goes out again.
pmarie
Posted
I posted last night but for some reason it is being moderated.
Short version is yesterday afternoon I thought there was improvement, but this morning I woke up feeling just as horrible as I usually do, so I just don't know. Took my second dose of prednisone this morning 2.5 hours ago. I am trying to stay optimistic. I know I have read on the internet that it can take anywhere from days to weeks to feel better, but most people here seem to have gotten major relief pretty quickly.
Still hoping and praying.
Anhaga pmarie
Posted
I know some people remember feeling almost complete relief within hours. As I posted above, I felt slightly better (as you did) but honestly have no recollection of the next two days, it was the third day I experienced the miracle, and for some people it can take at least a week. It takes a while for the pred to act on the inflammation. I remember the second or third night having a very strange sensation and thinking at the time if that was the worst side effect I'd experience I could handle it. It felt like something moving under my skin, really hard to describe. I only ever felt it that one time. And in retrospect I've wondered if it was the pred acting on inflamed blood vessels all over my body.
pmarie Anhaga
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Anhaga, thank you, I really needed this today. Even though I've read about the varying times for the pred to work, I was feeling really down bc I didn't get the overnight miracle. I guess I want it to work so bad that the misery this morning kind of knocked me down. Thanks, trying to keeping the faith and the hope.
Twopies pmarie
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Anhaga pmarie
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You must remember, too, that you have a fairly serious systemic disease and need to baby yourself a bit. You are a poorly bunny and must rest, as well as, we hope, eat a healthy, low carb diet and get a bit of outdoor exercise - if it's not too hot where you are today! If you pace yourself, even, or especially, after you start to feel better, that will aid your body in really starting to heal. We are all, I think, guilty of overdoing things once we feel better because we can suddenly do things we were having trouble with for so long.
I hope you start to feel better very soon.
I'm remembering more about my journey. I actually didn't find this forum until a couple of months on. My doctor didn't tell me pred wasn't a cure so I thought I'd be done and dusted in three months! Also I was told if the diagnosis was correct I should start to feel better within a week, so my initial expectations were much lower than yours, where you've read about people feeling better within hours. I think that is probably not the norm. A few days is probably more like it.
pmarie
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Hi Everyone,
I have been on the prednisone 15mg for a week and a day and it is finally working!! So if you are just starting pred and it's only been a few days, don't be discouraged! I have felt a little better each day, and this morning especially! I cleaned my kitchen, I'm doing laundry, and I have been up and down the stairs a bunch of times. The pain is not completely gone, I still have a few twinges here and there, but the only thing that hurts bad is my lower back, and I don't even know if it's related.
The pred has me feeling a little weird, and I've started to get migraines several times with the aura thing going on, but it goes away after 10-15 minutes, and so far today that hasn't happened. I've been working my full time job as usual.
I'm trying to pace myself for the rest of the day so I don't get up tomorrow in pain. But I am so happy and grateful to be able to move. I go back to the rheumatologist on Thursday and they're probably going to cut me down to 10mg. If I'm still getting the start of the migraines I might agree to it -- if not, I'm going to fight to keep the 15mg for two more weeks.
Anyway, I wanted to keep you posted, and thank everyone for all the info and encouragement!
Have a great weekendf!
EileenH pmarie
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pmarie EileenH
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Ok, I'm going to try to get them to give me 1 mg tablets so I can go down by 1.5. The 5 mg seems too extreme to me anyway after all I've read here. I'm so happy to be getting some relief and I really don't want it to worsen again if it can be prevented!
ptolemy pmarie
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