My whole body is in pain

General
1

Hi Im new to this support group and I don't know of anyone else with this disease and the doctors don't seem to know to much to give much support so I have many questions to ask to see if if it just me or is it all normal with the disease as I am 54 yrs old and feel like I'm about 90 yrs old I was a person that done everything myself and raised 4 children on my own ,now I have trouble getting out of bed and when I do I'm that stiff that it takes me a while before I can start walking I am in constant pain and it feels like every joint in my body is in pain from my neck all the way down my back, my hips, knees, ankles, wrist and fingers and now in my shoulder joint I feel like is this just in my mind or is it the disease that is causing this much pain and to this extent,I have to work full time but I'm struggling at the moment everyday which in turn I'm getting depressed because I cant do the things that I would like to do I am on methatrexate 20mg once a week and was put on Enbrel injections I stopped the Enbrel injection as I was gained 5 kg and didn't feel that I was getting the benefit that I thought I would, and recently didnt take the methatrexate for 3 weeks but now realise that it has help take the edge of the pain,So I guess what Im asking is that are others in pain in so many areas like me and is it a normal part of the disease and am I expecting a to much from the drugs as I thought I would be pretty normal by now I would like to hear about other people's experience so I can relate.

Thanks Wendy

2

Wendy,
I am sorry if this does not sound correct, but take a number, stand in line and welcome to the club. I try to deal with this with as much humor as I can.

I know exactly how you feel. It took almost 4 months before I really noticed the mtx working on the joints, about 2 months for the skin. I have been on enbrel for about 4 months now though it seems that it is not doing much. However, in thinking about it, I am much more active than I was 4 months ago though still with pain in joints, some new and some of the “old stand bys” a bit worse. It is something that you just take knowing that long term it is helping even though you cannot always tell from one day to the next. It can and usually takes months for the drugs to have you feel noticeably better.

Between all the joints and the tendons, it does get discouraging. But when I look back to where I was in November when I was diagnosed to now, there is a big improvement, just not as much as I would like. I have some joints that will be ok, then hurt for a few weeks, then get better on their own. Others will jus seem to ache constantly with some tantrums thrown in from time to time. My left hip has started hurting for past couple of months, but I think it was out of jealousy of the right hip getting all the attention. And lately my right knee decided it wanted as much attention as my left. I long for the days of simple sibling rivalry.

I also take ibuprofen. This does not do anything for the pain, but I just trust it is helping with inflammation. I also use a heating pad, ice and cool pacs, massage therapist and make use of a hot tub. I suggest experimenting with other treatments that might help you. I am trying to find s good physical trainer and chiropractor to see if they can help.

I do not feel guilty or depressed when I have to rest, lie down, take a nap or turn down things I may want to do. For me, it is about moderation, picking and choosing what to do along with planning. it does put my priorities into great perspective.

I hope this helps as I have gone and going through the same this as you. Though, for the record, I am “only” 47. Did I just admit to that?.. I mean I am only 39, though I have had 8 anniversaries of it.

3

Hi TheMatt,

Thank you for your reply and I love your sense of humor to go with it I have been on treatment for 18months and have been using the heat packs, soaking in hot baths to try and ease the body pain and again have some better days and then go thru periods of feeling like a cripple and the way the widespread body pain swaps and changes so reading your experience has helped me realise this is all part of the condition and I may need to focus on being more accepting of what I can and cant do without feeling guilty
TheMatt said:

Wendy,
I am sorry if this does not sound correct, but take a number, stand in line and welcome to the club. I try to deal with this with as much humor as I can.

I know exactly how you feel. It took almost 4 months before I really noticed the mtx working on the joints, about 2 months for the skin. I have been on enbrel for about 4 months now though it seems that it is not doing much. However, in thinking about it, I am much more active than I was 4 months ago though still with pain in joints, some new and some of the "old stand bys" a bit worse. It is something that you just take knowing that long term it is helping even though you cannot always tell from one day to the next. It can and usually takes months for the drugs to have you feel noticeably better.

Between all the joints and the tendons, it does get discouraging. But when I look back to where I was in November when I was diagnosed to now, there is a big improvement, just not as much as I would like. I have some joints that will be ok, then hurt for a few weeks, then get better on their own. Others will jus seem to ache constantly with some tantrums thrown in from time to time. My left hip has started hurting for past couple of months, but I think it was out of jealousy of the right hip getting all the attention. And lately my right knee decided it wanted as much attention as my left. I long for the days of simple sibling rivalry.

I also take ibuprofen. This does not do anything for the pain, but I just trust it is helping with inflammation. I also use a heating pad, ice and cool pacs, massage therapist and make use of a hot tub. I suggest experimenting with other treatments that might help you. I am trying to find s good physical trainer and chiropractor to see if they can help.

I do not feel guilty or depressed when I have to rest, lie down, take a nap or turn down things I may want to do. For me, it is about moderation, picking and choosing what to do along with planning. it does put my priorities into great perspective.

I hope this helps as I have gone and going through the same this as you. Though, for the record, I am "only" 47. Did I just admit to that?... I mean I am only 39, though I have had 8 anniversaries of it.
4

Dear Wendy,

Welcome to the group! Yes, 90 seems to be the most quoted age we all feel like some days. I will tell you that my Mom is 80 and in much better shape than any of us! I am pleased to say that this disease seemed to have skipped a generation with her, and I am glad to have it instead.

There are good days, days when it all seems manageable. Once in a while the meds work, the rain goes away, and happy things happen. Those are the days you will want to get out of bed, off the couch, away from the TV and do some living, do some of the things you miss out on so often with the people who mean the most to you.

Good and caring Doctors are always a benefit to us, many have had to change Doctors or have a heart to heart with them. The first thing my GP told me when he mentioned a Rheumatologist is that there would be clinical trials, and the object of that game was to try to end up in a better place than the place we begin.

My Rheumatologist told me that the Insurance companies decide the drugs we start with before getting to the ones he considers to be the most beneficial and then we start the trials at a new level.

Balance is important to find, and I have found that you have to move and stretch the stiffness away in the mornings, sometimes even in the middle of the night, and throughout the day. Right now I am trying to find a happy way to slightly cool and dehumidify my home without having cold air blow over me that causes stiffness, sore muscles and all over pain.

One of the most beneficial tools is talking about it here, it minimizes the complaining we do with others, especially those closest to us. There is also great information shared and even a few laughs!

We are here to celebrate the good days and to help you through the rough ones. Hope we are being of help to you, and that today is a good day for you.

Hugs,

SK

5

Dear SK

thanks for your reply it is helping reading that having the pain thru out the body is part of it because when I was first diagnosed I had two toes and a finger which I had to get cortisone injections as they were swollen and painful so that did indicated that they were being affected but when the rest of my joints (and so many of them) and my muscles were aching and I found everything seemed like a major effort I started thinking there must be something else wrong my rheumatologist really didnt say that was part of it as he mostly just checked my joints to see if any were swollen and my monthly blood results but as Im reading Im starting to see that others are the same I dont feel so alone with what Im feeling.

Wendy

SK said:

Dear Wendy,

Welcome to the group! Yes, 90 seems to be the most quoted age we all feel like some days. I will tell you that my Mom is 80 and in much better shape than any of us! I am pleased to say that this disease seemed to have skipped a generation with her, and I am glad to have it instead.

There are good days, days when it all seems manageable. Once in a while the meds work, the rain goes away, and happy things happen. Those are the days you will want to get out of bed, off the couch, away from the TV and do some living, do some of the things you miss out on so often with the people who mean the most to you.

Good and caring Doctors are always a benefit to us, many have had to change Doctors or have a heart to heart with them. The first thing my GP told me when he mentioned a Rheumatologist is that there would be clinical trials, and the object of that game was to try to end up in a better place than the place we begin.

My Rheumatologist told me that the Insurance companies decide the drugs we start with before getting to the ones he considers to be the most beneficial and then we start the trials at a new level.

Balance is important to find, and I have found that you have to move and stretch the stiffness away in the mornings, sometimes even in the middle of the night, and throughout the day. Right now I am trying to find a happy way to slightly cool and dehumidify my home without having cold air blow over me that causes stiffness, sore muscles and all over pain.

One of the most beneficial tools is talking about it here, it minimizes the complaining we do with others, especially those closest to us. There is also great information shared and even a few laughs!

We are here to celebrate the good days and to help you through the rough ones. Hope we are being of help to you, and that today is a good day for you.

Hugs,

SK

6

I went from a stiff and painful ankle (combined with my "normal" hand and knee pain, exhaustion, stiffness) to using two canes or a wheelchair with my body in huge amounts of pain in under three months. I can't take mtx, so went straight to Enbrel. Enbrel helped my arms and legs, but my back got worse (I have spondylitis) and I developed PsA in my chest. I then went off Enbrel, which reminded me of the amount I had regained being on Enbrel. I continued going downhill after my first Remicade injection, but five days after my second injection I started feeling better. By about a week and a half after my second injection, I was cane-free for the most part. Finding what works for you, maintaining a balance of activity and rest, and realizing that PsA is now our life partner helps a lot with depression. I wish you well!

7

I feel you're pain, figuratively and literally, Wendy. I'm so glad you were able to find a place that you can have others with similar issues to talk to. Everyone's PsA is different but the same if that makes sense. Apparently it takes a while to find the right meds for you and with persistence, I truly feel that you and your doctor will find the key. I've come to accept that I will never feel the same way I did when I was in my 20's, and yes, definitely I do feel 90 some days (which honestly scares the crap out of me because if I feel 90 at 44, what am I going to feel like if I do make it to 90?!). I hurt every single day in my hands, especially my right hand because I am right handed. I abuse it basically at work with typing, stapling, writing, stamping, folding, rinse repeat. My big toes hurt every day, my back has just started to hurt every day, and I'm currently recovering from cellulitis in both legs. The fatigue, all over aches and the pains make some days at work just unbearable. Thankfully I qualify for FMLA and can take days off when I feel bad without fear of losing my job, but it seems that I end up having to take off more and more as times goes by. I can only imagine that disability is looming in my future. I too started off with thinking that there would be a miracle drug or two, but now I'm getting ready to start my 4th, I've come to realize that what I want most is some relief and a semi-normal life like I used to have. If I can garden a few times a month, that will be nice. If I can work for a few more years, that's awesome. Again, I hope it helps to find others that are in the same boat :)

8

How are you Wendy? Hope everything is going better for you!

9

Hi bethy767

thanks for your response Im amazed at the feedback that I have received here just knowing what everyone else is experiencing is like reading about how I feel, I work at a Dr's surgery as a practice manager /receptionist and deal with patients every day with all sorts of illness and it scares the crap out of me thinking about what will it be like later in age and when I have the days of feeling completely miserable I often think how I would love to retire and to be able to potter around so I can get things done but on the other hand I don't want to wish my life away because there are so many things that I would like to do in life but the body determines everthing it is very conflicting thoughts again I guess firstly to understand what Im going thru is fairly normal and accepting the disease and working with it each day the best I can

bethy767 said:

I feel you're pain, figuratively and literally, Wendy. I'm so glad you were able to find a place that you can have others with similar issues to talk to. Everyone's PsA is different but the same if that makes sense. Apparently it takes a while to find the right meds for you and with persistence, I truly feel that you and your doctor will find the key. I've come to accept that I will never feel the same way I did when I was in my 20's, and yes, definitely I do feel 90 some days (which honestly scares the crap out of me because if I feel 90 at 44, what am I going to feel like if I do make it to 90?!). I hurt every single day in my hands, especially my right hand because I am right handed. I abuse it basically at work with typing, stapling, writing, stamping, folding, rinse repeat. My big toes hurt every day, my back has just started to hurt every day, and I'm currently recovering from cellulitis in both legs. The fatigue, all over aches and the pains make some days at work just unbearable. Thankfully I qualify for FMLA and can take days off when I feel bad without fear of losing my job, but it seems that I end up having to take off more and more as times goes by. I can only imagine that disability is looming in my future. I too started off with thinking that there would be a miracle drug or two, but now I'm getting ready to start my 4th, I've come to realize that what I want most is some relief and a semi-normal life like I used to have. If I can garden a few times a month, that will be nice. If I can work for a few more years, that's awesome. Again, I hope it helps to find others that are in the same boat :)

10

Thanks for your concern, I started back on my methrexate on monday after being off it for 3 weeks could'nt stand the crippling pain everywhere in my body and didnt realise how my it was helping me and Im going to give the Enbrel injections another go I just dread giving it to myself,After reading that others still have the body pain even on treatment I will accept it a bit more

SK said:

How are you Wendy? Hope everything is going better for you!

11


thankyou for you response I have a lot of weakness in my ankles as well I always feel that my ankles are going to give way on me and I am going to fall I wasn't sure if that was the PsA or not
nym said:

I went from a stiff and painful ankle (combined with my "normal" hand and knee pain, exhaustion, stiffness) to using two canes or a wheelchair with my body in huge amounts of pain in under three months. I can't take mtx, so went straight to Enbrel. Enbrel helped my arms and legs, but my back got worse (I have spondylitis) and I developed PsA in my chest. I then went off Enbrel, which reminded me of the amount I had regained being on Enbrel. I continued going downhill after my first Remicade injection, but five days after my second injection I started feeling better. By about a week and a half after my second injection, I was cane-free for the most part. Finding what works for you, maintaining a balance of activity and rest, and realizing that PsA is now our life partner helps a lot with depression. I wish you well!