You are quite right: Its not so funny when you have trouble getting off the throne
Sorry for your lot with Fibro. That seems to be a miserabe disease to have with a lot of difficulty to control. At least PMR will leave one day.. its just what it leaves us with!!!
I have asked if I might have Fibro too. Its a maybe , but my ESR & CRP are still up .I have so many sore spots .. not sure what is what???
Have your legs improved because you are off the Pred/ do you think that was the cause?
This is the week I see the surgeon for my GCA biopsy....not looking forward to this but I am wanting to just Do It! Cross another bridge ect.
Well, I saw my rheumy yesterday. He seems to think I should be feeling completely normal on the amount of prednisone I'm taking, jumping up and down with joy. I do feel tons better on the prednisone...I can turn over in bed, get out of bed, lift my arms and legs, dress, etc., but I don't feel "normal"! Starting to wonder what "normal" is!! From what I hear from all of you, there is still some pain and fatigue, especially in the morning, even when taking prednisone. Is this right?
He gave me a prescription for Tramadol, which I will wait to fill. I don't really want to take a pain pill, on top of everything else..especially if it will make me more tired. He also is checking my ESR and CRP again. Does the prednisone cause these tests to normalize?
Good luck on your GCA biopsy this week, Lyn. I'm sure it's scary, but it will be good to know what going on.
[QUOTE=LynM]Thanks Pat for your encouragement ect.
You are quite right: Its not so funny when you have trouble getting off the throne
Sorry for your lot with Fibro. That seems to be a miserabe disease to have with a lot of difficulty to control. At least PMR will leave one day.. its just what it leaves us with!!!
I have asked if I might have Fibro too. Its a maybe , but my ESR & CRP are still up .I have so many sore spots .. not sure what is what???
Have your legs improved because you are off the Pred/ do you think that was the cause?
This is the week I see the surgeon for my GCA biopsy....not looking forward to this but I am wanting to just Do It! Cross another bridge ect.
Hugs Lyn
[/QUOTE]
Hey Lyn...The cause of the sore legs was the PMR and the pred did help quite a bit. I am looking now at a knee replacement down the road. Just went to physio for it but it looks pretty bad. The arthritis has been eating away. If you think you may have fibro, go online and find the pictures that gives you the points that they use to see if you have fibro. These spots are on the hips, the outside of the knees, your butt and along the breastbone. There are others too but these seem to be the main ones. Hope you are not looking at that too.
I wish you tons of luck with the GCA biopsy and hope the outcome is negative. Keep us posted.
Pat
[QUOTE=montanawoman]Hello,
Well, I saw my rheumy yesterday. He seems to think I should be feeling completely normal on the amount of prednisone I'm taking, jumping up and down with joy. I do feel tons better on the prednisone...I can turn over in bed, get out of bed, lift my arms and legs, dress, etc., but I don't feel "normal"! Starting to wonder what "normal" is!! From what I hear from all of you, there is still some pain and fatigue, especially in the morning, even when taking prednisone. Is this right?
He gave me a prescription for Tramadol, which I will wait to fill. I don't really want to take a pain pill, on top of everything else..especially if it will make me more tired. He also is checking my ESR and CRP again. Does the prednisone cause these tests to normalize?
Good luck on your GCA biopsy this week, Lyn. I'm sure it's scary, but it will be good to know what going on.
Thanks for all the support everyone...It means a lot to me.
Jannie
[/QUOTE]
Hi Jannie
I think all the Drs. think we should be up doing the jig but we only can do what we can do. The pred does make us feel good until it is time to decrease then you start to feel some discomfort. I really did not want to decrease but after seeing the side effects I figured I had better start. Be careful not to decrease too fast.
There may be days that you will want to take the Tramadol so if you have it for emergency purposes that should be ok. My Dr. checked my ESR and CRP once a month and the pred does tend to check the inflamation so it will tend to go up and down.
Did you guys read the post on LDN. The lady who is currently on LDN for poly is very impressed and right now she is busy closing a buisness down but when she is free I am going to have her come here and give you all some notes. I plan on taking it for my fibro. It is really good to know there is something other than pred for controlling these AI diseases.
You take care of yourself Jannie and anytime you want to ask a question or just chat just drop in.
Pat
Jannie just a short note , been taking Tramadol too after I got a painful osteo wedge fracture last year. It hasn't caused any sleepiness, apart from being able to sleep because the pain was relieved.
I believe they use the ESR/ CRP as I guide to lowering the Pred when these resuls come down, and of course how we are feeling is also considered.
Try not to worry too much on how you are 'supposed 'to feel, even by your Dr ect. You can only tell them how it is and get help when it is not!!! x
Pat thanks for the Fibro reference and your wishes. I will give the gory details uugg. I have read a bit on the LDN and look forward to hearing more about it.
Hugs Lyn
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