PsA and Muscle Pain

How much is too much? Like has already been said, it's very individual. For me, walking is my limit. I can't do mare than that, and not pay for it later. When you aren't feeling so hot, focus on stretching and getting your ADLs done. On bad days, that's all you can do anyway. I set a limit for myself - every day there is a level of function that I will not fall below. It is my baseline. There are tasks that must get done, and I do them. Based on how I feel, I add things in order of priority.

Example:

Daily Baseline- Bathe, dress for work (even if I'm working from the home office), eat properly, stretch, go to work, pick up house, make dinner, clean up, stretch again. I do these things every day no matter how crappy I feel.

Extra ADLs: Household or yard chores such as a load of laundry or cleaning litter boxes, or walk the dog (instead of the kids doing so). These get worked in when I feel good. I am running a home with 5 people in it and have 4 floors to deal with, so these chores really are energy and calorie expending. I get my list of "extras" done each week one way or another, but I do them when I feel good. I have gotten good at hearing what my body has to tell me, but it took a long time to get there. If I am careful, I can get everything done and not feel like I've killed myself to do it. That's the trick/ secret to figuring out how much is enough or too much.

Thanks Grumypy :-) I am still trying to work on what I can and can't do. I manage to get the daily stuff done, sometimes with help from my son and husband (bringing in wood). I've also been getting out for daily hikes with our lab, even if only for 15 or 20 min.

I'd like to get back on the ship, but at this point I'm not there yet and not sure it's even going to be a possibility as the fitness level far exceeds what I am currently capable of.

My disease has been fairly mild until this point...and even with the increased pain and inflammation...It's still probably pretty mild. I'm thinking I need to step up and push myself more and see what happens. Hopefully I can find that happy medium.

Hi Grumpy Cat! Not to be nosy or anything but what kind of work are you doing at home? I am curious because I have lost my job from being out too much. I would like to do something for a living but I don't know what that is at this point. I'm not sure I can do a job that would require a lot of typing because my hands and wrists will brun with pain the next day. I will understand if you don't want to answer. Thanks for all your advice!

Actually my daughter went on to play many matches like that. She was on the pro tour Even played the Williams sisters. Had she not faced the extreme pain of the right stretching, icing and body care, she likley would have never payed again. her prematch stretching and preparation was an hour post match could be a day or so.

Its not "exercise" that make the difference although its important, Its the realization that for many of us doing even the simplest things can aggravate pain that can be avoided (or mitigated) if we do the right things.

How many of us wake up in the morning to the alarm hit the snooze and finally drag ourselves out of bed with dread of the upcoming day and hop right to the activity of the day. When my therapists worked out a "wake up routine" (about 30 minutes) that prepared my body for the day ahead, it was unbelievable the difference it made. Having my SI's shoulders and hips in particular stretched toned and ready changed my life. A couple of tune-ups during the day.

Its not just exercise..... At one point in my life I was bulked big and strong (college football player). I wound up in the service (bad lottery number) where I figured out I MIGHT be able to avoid some real jungle action if I spent the next few years "training". I was combat medic, then I learned to jump out of airplane, and then got to wear a Green beanie. My plans backfired as I didn't spend a lot of time in the Jungle but did jump out of a lot of airplanes for the express purpose of killing people and bringing back our guys who ran into some difficulties.

In the course of that training the peeled of 65 pounds of bulk and turned me into a "lean. mean, mobile, agile, and hostile, fighting machine. You would not have wanted to see this College Jock after his first 5:00 AM "Airborne Shuffle"

The point is exercise is NOT enough or even helpful unless it has a specific purpose to meet a specific need for you. A few minutes of stretching may be all you need to avoid "trouble" Keep in mind however muscles start to go to hell in a few days of inactivity. Hell few hours at my puter concentrating on a project can mess me up.

I can understand that. I don't like being this sedentary. I will talk with my dr about what type of things are safe to do. I want so much to be a productive member of society. I just don't know what I can do, if I use my hands to make things or type the pain in my wrists skyrockets! I felt great pride in doing the best job I knew how to do when I was working. Now I feel useless. Perhaps meeting with a psychologist would be of some benefit.

I might suggest an OT who can actually help adapt you to your tasks. Its amazing what they can do, not only in terms of function but pain management skills..............

Ok at least that is a place to go from. Maybe if I can manage a way to get back on my feet then I can once again become a productive member of society, I just hope that in the mean time while I'm trying to find a way to do that I can get the help I need. I have no idea if I will get disability or not, but I do know that I will have to do a job that isn't too demanding if I can't. I just don't know what that is given what I'm able to do, or not do. Thanks for the advice!

I am a nurse and coordinate care for patients over the phone. I get to spend most of my time at home - I go out maybe 3 mornings a week to visit my doctors, but other than that, I am at home. I do a lot of documentation ("If you didn't write it, it didn't happen") and use Dragon software when my hands hurt. Its a pretty cool gig. I'm lucky to have it.

Raven said:

Hi Grumpy Cat! Not to be nosy or anything but what kind of work are you doing at home? I am curious because I have lost my job from being out too much. I would like to do something for a living but I don't know what that is at this point. I'm not sure I can do a job that would require a lot of typing because my hands and wrists will brun with pain the next day. I will understand if you don't want to answer. Thanks for all your advice!

Sounds that way! Did that take a lot of schooling to be able to do that? I was thinking of going to the local community college and seeing what type of work I could do that is like that. Plus I have the Vocational Rehabilitation I could try. I guess I will just have to call back there and see if anything can work for me. Right now I'm not working and while on my bad days I am relieved, for the most part I hate it. Thanks for your reply!

Raven,

I think water exercises are absolutely beneficial with this disease! I live on a small Island with no pool facility so to partake in any program would cause me to travel. I do however have a hot tub and getting in that and doing stretches and just moving around is very beneficial.

This disease is not only impacts our physical body, it's also an emotional journey.

I have been thinking of seeking some counselling to help me deal with the emotional part :-)


Raven said:

I'm not surprised to hear that at all. But has her past experience with that tennis match slowed her down at all? Will she ever play a match like that again? I don't like to sit around either as I know doing that can't be any good for those of us with this disease. But how much exercise is the right answer? That is probably so individual to the point of being minute. I will ask my dr when I see him next mo if I can get signed uo for some warm water exercises. I did it for a short time, but the dr that was sending me to that class was so expensive to see. I need to do something though as I don't want to atrophy either!

TaraLynn said:

I have been avoiding activity due to the increase pain and have stressed it may bring on a flare. Pain is generally a sign to rest (overuse), however I'm not sure that theory works for this disease. R.I.C.E....rest, ice, compression and elevation.

I've had tennis elbow and it's brutal! I also have had rotator cuff tendonitis to the point that with out therapy I would have needed surgery as I lost the ability to move my arm completely.

Thanks Lamb, this feed has been enlightening.

tntlamb said:

That "pain" is as Tiger and Seenie mentioned very much a "normal" thing for Psa. Its hard to diagnose with "studies etc because it is inflamation but just a teenie tiny bit of inflammation in a teeny tiny part of your body. Specifically your entheses. Sadly the best thing to do (if it is the problem) is tomove and stretch it out.

Probably on of the most difficult things I have ever watched (as a parent) was watching my daughter play for the national collegiate tennis title It was an incredible match with split sets and 76 Deuces. The match went a very long time (3 hours). Jessie could not walk without assistance when she came off the court. If you ever wondered what happens after a world class athletic event, its not what you think. The athletes give themselves to the trainers as did Jessie She started out in a tub covered with ice to her neck, then the stretching started. As hard as the trainers worked to keep her moving especially her arms an shoulders she simply couldn't do it. They had her on IV'S Oxygen massage etc.etc She couldn't keep up and the enthesitis (tennis elbow) took over and she literally could NOT move enough to even feed herself. The pain was so extreme she wouldn't have eaten anyway. They finally had to shoot her up. By mid night she could move on her own but the stretching and moving never stopped to get to that point. By the next day you would have though nothing happened.

There is a point to the story. Being in shape isn't the issue. I promise you Jessie was in great shape. With PsA, simply doing or overdoing is never the muscle pain that goes away in a few days or with a couple of advil. Its much worse than that. Listening to your body is listening to a lie. I promise if you rest that body, don't keep up with the movement , stretching etc. The pain becomes incredible even with the slightest effort. This isn't a DIY project A few sessions with a good PT/trainer will be helpful

My hope is that my dr will send me to a place like that again, this winter has been brutal so far and it isn't helping. The cold sure does bother my tendons! If I can strengthen my muscles more maybe that will help with the pain.

So lamb, a tiny bit of inflammation is the norm with PSA and not anything to worry about? Joint damage only occurs with an excessive amount? I'm just trying to get an understand of the normal with PSA....and the damaging part of PSA as far as inflammation :-) Does the Enthesitis part of PSA cause less damage?

tntlamb said:

That "pain" is as Tiger and Seenie mentioned very much a "normal" thing for Psa. Its hard to diagnose with "studies etc because it is inflamation but just a teenie tiny bit of inflammation in a teeny tiny part of your body. Specifically your entheses. Sadly the best thing to do (if it is the problem) is tomove and stretch it out.

Probably on of the most difficult things I have ever watched (as a parent) was watching my daughter play for the national collegiate tennis title It was an incredible match with split sets and 76 Deuces. The match went a very long time (3 hours). Jessie could not walk without assistance when she came off the court. If you ever wondered what happens after a world class athletic event, its not what you think. The athletes give themselves to the trainers as did Jessie She started out in a tub covered with ice to her neck, then the stretching started. As hard as the trainers worked to keep her moving especially her arms an shoulders she simply couldn't do it. They had her on IV'S Oxygen massage etc.etc She couldn't keep up and the enthesitis (tennis elbow) took over and she literally could NOT move enough to even feed herself. The pain was so extreme she wouldn't have eaten anyway. They finally had to shoot her up. By mid night she could move on her own but the stretching and moving never stopped to get to that point. By the next day you would have though nothing happened.

There is a point to the story. Being in shape isn't the issue. I promise you Jessie was in great shape. With PsA, simply doing or overdoing is never the muscle pain that goes away in a few days or with a couple of advil. Its much worse than that. Listening to your body is listening to a lie. I promise if you rest that body, don't keep up with the movement , stretching etc. The pain becomes incredible even with the slightest effort. This isn't a DIY project A few sessions with a good PT/trainer will be helpful

The adage “if you don’t use it…you loose it” comes to mind. When Lamb says about having a stretch routine to get up in the mornings, It is the ONLY way I would get up for work!
I start work usually at 7am and live 5 mins from the hospital where I’m based.
Alarm goes off at 5.20am I press snooze then roll slowly onto my back and start stretching, often I doze off, snooze goes off every 5 mins and each time i move and stretch in the warmth of my bed…this goes on for 30 mins. Only then can I get up and at 'em. Everything is laid out ready the night before so no extra effort is required. Washed dressed, I do a few mins of tai chi working specifically on the parts of me that really hurt.

I’m never pain free, my work is active and involves a lot of stretching and moving to clean all the equipment after use…we all do this from the manager to the new starters. Its fast track dialysis so we are never standing still. If I didn’t do this job I don’t think I would be as active as I am.
My muscle pain is the worst problem in my shoulders, some days I swear under my breath as a way to cope…actually funny story there. One of our many Muslim patients said to me several months back that he could tell I was a good Christian as he can often see my lips moving in prayer for my patients (!) I felt really bad that he thought I was offering prayers when in fact I was swearing. Has made me try to mend my ways!!
Keep stretching people…yes don’t go crazy but your body need strong muscles to support your joints :slight_smile:

I start work at 6am...live 30 min away (if the roads are clear), 4 am wake up :-) Thanks for sharing Louise, I think daily pain is just going to be part of this. I'm going to try and get back on the ship next month. Unfortunately my job is highly safety sensitive and I have to be cautious of meds due to my certificates, so I am limited on what I can take as far as pain management, but if I keep the inflammation down with a Nsaid (Celebrex) daily, then maybe I can get a few more years with my crew :-) I'll start doing some weight lifting again and see how it goes, I have been off work for 6 months this month.

My job is physical and requires me to pull tie up and weather lines a minimum ten times daily, average 30 flights of stairs daily, walking approx. 8k daily on top of being required to lift (pack) ship stores, cleaning and so on.



Louise Hoy said:

The adage "if you don't use it....you loose it" comes to mind. When Lamb says about having a stretch routine to get up in the mornings, It is the ONLY way I would get up for work!
I start work usually at 7am and live 5 mins from the hospital where I'm based.
Alarm goes off at 5.20am I press snooze then roll slowly onto my back and start stretching, often I doze off, snooze goes off every 5 mins and each time i move and stretch in the warmth of my bed.....this goes on for 30 mins. Only then can I get up and at 'em. Everything is laid out ready the night before so no extra effort is required. Washed dressed, I do a few mins of tai chi working specifically on the parts of me that really hurt.

I'm never pain free, my work is active and involves a lot of stretching and moving to clean all the equipment after use...we all do this from the manager to the new starters. Its fast track dialysis so we are never standing still. If I didn't do this job I don't think I would be as active as I am.
My muscle pain is the worst problem in my shoulders, some days I swear under my breath as a way to cope...actually funny story there. One of our many Muslim patients said to me several months back that he could tell I was a good Christian as he can often see my lips moving in prayer for my patients (!) I felt really bad that he thought I was offering prayers when in fact I was swearing. Has made me try to mend my ways!!
Keep stretching people....yes don't go crazy but your body need strong muscles to support your joints :)

I was told last year I had fibromyalgia my muscles were in teriffic pain called my doc they had me come in and I told him it was my muscles hurting told him the location and that is when he said it was the fibro even to touch or rub certain spots hurt so bad I told him that I was filling the tub with the hottest water I could stand and instantly the aching on the top part of my legs would stop aching but I couldn't live in a bath tub lol The hot water helped for about 20 minutes and then would start all over again I learned after the hot soak waited 10 minutes rubbed down with ben gay put my heating blanket on high took pain pill they settled down for a bit.I was also told that people who have psa have a higher chance to develop it they go hand and hand hope this helped god bless

To get an associate's degree it's 2 years of full-time work at a community college with an accredited program. It's around 18 credits a semester plus whatever gen-ed classes and co-requirement classes you need to take. I would not advise trying to do it in 2 years though. I had all of my gen ed credits and co-requisites done prior to admission to my program and still took 12 credits a semester of nursing classes for 2 years. Then you would probably need a few years of clinical experience before applying for a job like mine. My extra education, management and clinical experience were taken into account when I interviewed, so even though I had not done this sort of nursing work before they hired me. It has definitely been worth it though and I feel like I will always be able to find SOMETHING that I can do in my field, no matter what may come with my health. I plan to retire into teaching someday. It's a wonderful field and there are so many opportunities available. It's hard to get going: programs are competitive (even at the AS level) and it's a lot of work and stress, but so worth it!

I want to add that this might be a good route to try. There is still free money available for people in nursing programs. Between that and student loans, maybe an easy part time job, you could probably live okay while in school. Like I mentioned, there are so many different jobs with different levels of activity that I'm sure you could find one to fit your physical abilities.

Raven said:

Sounds that way! Did that take a lot of schooling to be able to do that? I was thinking of going to the local community college and seeing what type of work I could do that is like that. Plus I have the Vocational Rehabilitation I could try. I guess I will just have to call back there and see if anything can work for me. Right now I'm not working and while on my bad days I am relieved, for the most part I hate it. Thanks for your reply!

I'm sure to have muscle pain. Esp when I over do it. I have to admit...when there's a lot of pain...I can sometimes not really tell one thing from another because everything will hurt. I have not been diagnosed with Fibromyalgia. I actually wondered about it when I was having a flare up. It's possible but I think that's just one of the things PsA does. The burning pain is a regular occurrence...definitely from PsA for me. I had soft tissue pain for years before I ever had pain in the joints,which just started this year.

I avoid all heavy lifting...my son is on permanent grocery duty, I have an electric jar opener and I hope electric can opener soon. In short if something doesn't happen easily...then I pass it along to someone for help. I don't push it. I learned that the hard way, after putting myself through a lot of pain and suffering.

I know that if you have PsA, you are at a much higher risk for inflammation of the tendons and ligaments.

I have not been diagnosed with fibro, that's not to say they haven't tried. I do have pain in connective tissue, but it is in my tendons and it is related to PsA. It's not all that uncommon for folks with PsA to have enthesitis or tendonitis as well as joint pain. Sometimes it an feel muscular, but if you note where the pain originates, you may find that it is this instead of muscles.

So glad I found this thread! I did my leg work out the other day and have been unable to move. My muscles are beyond sore, but the pain seemed so unusual. My husband wants me to slow down the workouts, but I have. This might explain the type of pain I am in.
Also my reaumy tried to tell me I had the F word as well and I told her that this is all PSA related. This thread has provided me with some great info, thank you!