I understand that you have pain when certain joints are swollen and have inflammation, but can someone please explain to me how come the whole body hurts . I get tenderness but not swelling in every single joint in my fingers, wrist,hips,from my neck all the way down my back and my ankles ( I feel that my ankle is going to give way and I'm going to fall)and now in my shoulder I don't know if I have done something to my shoulder or is it the arthritis I ache deep into the bones and it feels like all my muscles bruised.I also have trouble turning in bed feel like I don't have the strength to turn my body is this part of it ?Is this what everyone else is feeling or is just me as I feel like a hypochondriac .I would like to hear how others feel?
Inflammation can be systemic (effects everything) depending on the type of PsA you have (its not always cl;ear what type it is) There is a lot of refereed pain especially if you have the spodylosis type (spine)
Sometimes the inflammation is not severe enough to be "seen" but tust me it can rear its ugly head. If (sleep wrong and sleep to long with my shoulder on the mattress, I can't movett in the morning. Same with my legs. If actually collapsed getting out of bed (usually from propping one of my pillows wrong.)
I'm working in shop on some manner to attach me to a spit if I could figure out how to eliminate the pressure points., Then I could even light a fire underneath and have a body wide "heating Pad"
The fact that the inflammation is body wide and sometimes only appears in a few spots makes some things a bit difficult to understand. Most of the medications we use are for the systems (patches and salves are growing in both development and use along with better shooting up) What happens is the disease starts to get "better because inflamation in the WHOLE body is getting better, but some of those specific "spots" are just a little better (sorta like peeling layers off) We tell the doc that and they nod, jot a few notes, poke a few spot, jot a few more notes notes and say "well we check again in XXXX"
WE leave PO"D that the doc isn't listening to us and is doing nothing for the pain. What he really does is fail to communicate is that the drug is working but it takes a while until the inflammation goes down where it really hurts (Its logical really, the worst spots are the last to get better) Its the same process when we hear from the folks here, I didn't think XXX was working until one day I tied my own shoes and even realize it.
If you always keep at the top of your mind the Rheumy's job is to treat the disease, and getting pain control is a bonus (or someone else's job) your relationship will improve overnight and you will get a lot more information......
Oh and you are not a hypochondriac. If you ever get copies of your medical records and see"psycosomatic pain" or somatic used as an adjective do not fly off the handel. NEITHER means the pain isn't real. it only means its amplified beyond what the symptoms would normally be. There are a ton of reasons from nerve damage to simply having been in pain to long and a lot in between. neither will cause you to be denied treatment (especially with a PsA Dx.
Hi Wendy< you are not alone. Some days I also feel the pain everywhere< my back, hips, shoulders, knees and wrists. Nobody will understand like we do. Some people respond better to medication and others just have to try something else. I hope you find something that works for you
Hi Wendy,
I can relate to all of this, I have not had to stop the Enbrel, but the Doctor told me after the SZ and the MX did not work for me that we just think that until we actually stop it and sometimes only then do we realize just how much it did help us, but those really did not help me.
You are not imagining any of the wide-spread pain, it is very real to most of us, if not all of us, though we can all have our worst spots, and like they said, those are the toughest ones to ease, much less eliminate.
Lamb is working on an entire body heating pad, and I entertain getting out in my husband's shop and building a chiropractic table to sleep on, face down so that my back does not have the pressure of me lying on it.
Mine is the Spondilitis (SI joint) type, but I wonder if we have ONLY one type. I don't know the answer to that as yet. Will let you know if I figure that one out. In the mean time, please know that we are all here for you, will do our best to relay our experiences to you, and will talk to you anytime.
Be as well as you can, and as happy as you can,
SK
I have found sleeping with an electric blanket helps with the aches and stiffness of the body.
Yes I found that my electric blanket is my best friend it is winter here in Australia and when I'm home I found that is the way I can get relief because of the aching that goes deep into my bones
bel mom said:
I have found sleeping with an electric blanket helps with the aches and stiffness of the body.
thanks for your reply
i am starting to understand slowly about this condition and that it is not just about a inflamed painful joint it is your muscle and tendons also I am treating this condition little more seriously to understand it as I have not got much from the Dr's what to expect from the medication
tntlamb said:
Inflammation can be systemic (effects everything) depending on the type of PsA you have (its not always cl;ear what type it is) There is a lot of refereed pain especially if you have the spodylosis type (spine)
Sometimes the inflammation is not severe enough to be "seen" but tust me it can rear its ugly head. If (sleep wrong and sleep to long with my shoulder on the mattress, I can't movett in the morning. Same with my legs. If actually collapsed getting out of bed (usually from propping one of my pillows wrong.)
I'm working in shop on some manner to attach me to a spit if I could figure out how to eliminate the pressure points., Then I could even light a fire underneath and have a body wide "heating Pad"
The fact that the inflammation is body wide and sometimes only appears in a few spots makes some things a bit difficult to understand. Most of the medications we use are for the systems (patches and salves are growing in both development and use along with better shooting up) What happens is the disease starts to get "better because inflamation in the WHOLE body is getting better, but some of those specific "spots" are just a little better (sorta like peeling layers off) We tell the doc that and they nod, jot a few notes, poke a few spot, jot a few more notes notes and say "well we check again in XXXX"
WE leave PO"D that the doc isn't listening to us and is doing nothing for the pain. What he really does is fail to communicate is that the drug is working but it takes a while until the inflammation goes down where it really hurts (Its logical really, the worst spots are the last to get better) Its the same process when we hear from the folks here, I didn't think XXX was working until one day I tied my own shoes and even realize it.
If you always keep at the top of your mind the Rheumy's job is to treat the disease, and getting pain control is a bonus (or someone else's job) your relationship will improve overnight and you will get a lot more information......
Oh and you are not a hypochondriac. If you ever get copies of your medical records and see"psycosomatic pain" or somatic used as an adjective do not fly off the handel. NEITHER means the pain isn't real. it only means its amplified beyond what the symptoms would normally be. There are a ton of reasons from nerve damage to simply having been in pain to long and a lot in between. neither will cause you to be denied treatment (especially with a PsA Dx.
thanks for your reply Im so glad there are others that I can relate to, this it is helping me to accept this is a very real condition and to be taken seriously so I can try and help mysef
JoJo said:
Hi Wendy< you are not alone. Some days I also feel the pain everywhere< my back, hips, shoulders, knees and wrists. Nobody will understand like we do. Some people respond better to medication and others just have to try something else. I hope you find something that works for you
I will not go off my medications unless there is a very good reason after going thru the amount of pain and misery that I have been feeling but on the other hand I'm glad I have found this support group to read everyone's experiences with this disease so I can relate and know it is all part of it,I just have to hang in there until the medication start to work again
SK said:
Hi Wendy,
I can relate to all of this, I have not had to stop the Enbrel, but the Doctor told me after the SZ and the MX did not work for me that we just think that until we actually stop it and sometimes only then do we realize just how much it did help us, but those really did not help me.
You are not imagining any of the wide-spread pain, it is very real to most of us, if not all of us, though we can all have our worst spots, and like they said, those are the toughest ones to ease, much less eliminate.
Lamb is working on an entire body heating pad, and I entertain getting out in my husband's shop and building a chiropractic table to sleep on, face down so that my back does not have the pressure of me lying on it.
Mine is the Spondilitis (SI joint) type, but I wonder if we have ONLY one type. I don't know the answer to that as yet. Will let you know if I figure that one out. In the mean time, please know that we are all here for you, will do our best to relay our experiences to you, and will talk to you anytime.
Be as well as you can, and as happy as you can,
SK
I will not go off my medications unless there is a very good reason after going thru the amount of pain and misery that I have been feeling but on the other hand I'm glad I have found this support group to read everyone's experiences with this disease so I can relate and know it is all part of it,I just have to hang in there until the medication start to work again
SK said:
Hi Wendy,
I can relate to all of this, I have not had to stop the Enbrel, but the Doctor told me after the SZ and the MX did not work for me that we just think that until we actually stop it and sometimes only then do we realize just how much it did help us, but those really did not help me.
You are not imagining any of the wide-spread pain, it is very real to most of us, if not all of us, though we can all have our worst spots, and like they said, those are the toughest ones to ease, much less eliminate.
Lamb is working on an entire body heating pad, and I entertain getting out in my husband's shop and building a chiropractic table to sleep on, face down so that my back does not have the pressure of me lying on it.
Mine is the Spondilitis (SI joint) type, but I wonder if we have ONLY one type. I don't know the answer to that as yet. Will let you know if I figure that one out. In the mean time, please know that we are all here for you, will do our best to relay our experiences to you, and will talk to you anytime.
Be as well as you can, and as happy as you can,
SK
And obviously being tired/fatigued makes everything hurt just that little bit more...