OK, I want to make sure I understand. Stretching and moving and exercising with enthesitis will not cause further inflammation, but will actually help it improve? can you over do it? How do you know what is reasonable? I know that if I go out and walk around all day, say for example running errands and grocery shopping, my symptoms are exacerbated, I have more swelling, etc. Is it because I am deconditioned or because I did too much? Is water exercise a good course of action to get started?
It is very individualized. If I do repetitons of stretching on land my inflammation and enthesitis increases. On land I do my exercises to a count and relax into them to get a better stretch without swelling and pain afterwards. In a heated pool I can do reps with impunity! I do both, though not as often as I should esp in this cold.
I have also found at times my tolerance increases or decreases without a known cause. Sometimes my PsA seems quite reactive to exercise other times less so . So I increase my activity when I have a period of less reaction and slow it down a bit when it is reacting to everything. I think I sense some of the reaction may be due to when the Remicade is fully on board and when I am due for a dose but it is really hard to tell.
It is very individualized. If I do repetitons of stretching on land my inflammation and enthesitis increases. On land I do my exercises to a count and relax into them to get a better stretch without swelling and pain afterwards. In a heated pool I can do reps with impunity! I do both, though not as often as I should esp in this cold.
I have also found at times my tolerance increases or decreases without a known cause. Sometimes my PsA seems quite reactive to exercise other times less so . So I increase my activity when I have a period of less reaction and slow it down a bit when it is reacting to everything. I think I sense some of the reaction may be due to when the Remicade is fully on board and when I am due for a dose but it is really hard to tell.
Thanks, Lamb. I know it is for teens, but it in uncanny how the graphics depict my pain points exactly ! I am on my third biologic and have, as of yet, not responded to any of them. I need a battle plan. Instead of catastrophizinng I need to start strategizing.
tntlamb said:
Everybody is a bit different. here is a couple of guides:
I am so glad that this thread was revived! The past 4 days have been a bit of a cramp nightmare. I am having an issue in my left leg and I am almost certain that it is originating with wither a muscle group or tendons in that hip. If I massage deep enough on a certain spot in my hip, I can get the whole leg to release the spasm which is in my lower back, thigh, calf, feet and toes on the left side of my left leg. I started stretching the hip last night when I finally isolated the source, and it's doing better (ie. no longer in full spasm). I am starting gently, but this will be something that I think I will have to do daily because it has happened before and each episode is worse than the last. I am really hoping that the stretching will be the "cure", because it is really uncomfortable when your whole leg decides to spasm for 4 days.
I, too, am having a hard time believing the PsA alone is responsible for my full body aches. The best description I have is that I experience flu-like symptoms without the respiratory component. I ache everywhere, beginning with a headache and then including what seems like all my muscles. Also, the fatigue is unbelievable! It even hurts when I breathe, but I can tell it's muscular and not a lung problem. I get worse as the day goes on, and by early evening I'm "toast." Now, for the million dollar question that I'm sure no one can completely answer -- is this a PsA flare or maybe Fibromyalgia? My joints always hurt, so I know the PsA is active all the time. I currently take Sulindac (an anti-inflammatory) and Methotrexate, and am waiting on my first round of Enbrel to arrive from the specialty pharmacy. It can't be too soon! I'm anxious to see if it helps any of this. I've also heard that I should journal my symptoms, which I think is a good idea and I will begin doing that.
Fibro has 16 (or 18) "tender points." PsA has 66 (I think I recently posted a diagram of some of them) Now I realize I'm statistics type of guy but if one was having a major flare of PsA with 66 Identity points of Pain plus systemic issues or a flare of fibro with 16, which do you think can make the whole body ache. I have all the sympathy in the world for FM patients but you need to get used to the idea that PsA can make every part of your body hurt. Not only can it go after your joints it can (not uncommonly) go into your bones and cause bone marrow edema, go after your organs eyes endocrine system and digestive system.
Swede54 said:
I, too, am having a hard time believing the PsA alone is responsible for my full body aches. The best description I have is that I experience flu-like symptoms without the respiratory component. I ache everywhere, beginning with a headache and then including what seems like all my muscles. Also, the fatigue is unbelievable! It even hurts when I breathe, but I can tell it's muscular and not a lung problem. I get worse as the day goes on, and by early evening I'm "toast." Now, for the million dollar question that I'm sure no one can completely answer -- is this a PsA flare or maybe Fibromyalgia? My joints always hurt, so I know the PsA is active all the time. I currently take Sulindac (an anti-inflammatory) and Methotrexate, and am waiting on my first round of Enbrel to arrive from the specialty pharmacy. It can't be too soon! I'm anxious to see if it helps any of this. I've also heard that I should journal my symptoms, which I think is a good idea and I will begin doing that.
Fibro has 16 (or 18) "tender points." PsA has 66 (I think I recently posted a diagram of some of them) Now I realize I'm statistics type of guy but if one was having a major flare of PsA with 66 Identity points of Pain plus systemic issues or a flare of fibro with 16, which do you think can make the whole body ache. I have all the sympathy in the world for FM patients but you need to get used to the idea that PsA can make every part of your body hurt. Not only can it go after your joints it can (not uncommonly) go into your bones and cause bone marrow edema, go after your organs eyes endocrine system and digestive system.
Swede54 said:
I, too, am having a hard time believing the PsA alone is responsible for my full body aches. The best description I have is that I experience flu-like symptoms without the respiratory component. I ache everywhere, beginning with a headache and then including what seems like all my muscles. Also, the fatigue is unbelievable! It even hurts when I breathe, but I can tell it's muscular and not a lung problem. I get worse as the day goes on, and by early evening I'm "toast." Now, for the million dollar question that I'm sure no one can completely answer -- is this a PsA flare or maybe Fibromyalgia? My joints always hurt, so I know the PsA is active all the time. I currently take Sulindac (an anti-inflammatory) and Methotrexate, and am waiting on my first round of Enbrel to arrive from the specialty pharmacy. It can't be too soon! I'm anxious to see if it helps any of this. I've also heard that I should journal my symptoms, which I think is a good idea and I will begin doing that.
Thanks, Lamb. I am a bit of a statistics nut myself, and I wonder why rheumatologists in general (or is it just mine?) don't inform a new patient of these PsA-induced tender points. I have had problems in various areas of my endocrine system since I was a child, and as an adult have Hashimoto's Thyroid Disease (diagnosed at age 17), Insulin Resistance and now, finally, a diagnosis of PsA after complaining to my internist for years that I didn't think the deformities in my right hand, and they are severe, were a simple case of osteoarthritis. I have always blamed the pain in my SI joints as originating from being thrown from a horse at age 18, but after a recent x-ray there were definite signs of inflammation and "erosive" arthritis. I am thankful for this site, and even though a cure doesn't exist, moral support surely does. Now, I'm wondering, does anyone suffer from a constant runny nose from MTX? I never had the problem prior to the medication.
I have the tendonitis in my heels, both of them. They are always tired and they ache. I have some deep muscle pain in my right arm and thigh. I appreciate these discussions. I dont feel so alone and confused.
Raven, do I ever ! PsA is a "systemic" disease so affects, ligaments, and tendons, not just joints. I always thought Fibromyalgia was a medical myth(sorry sufferers !) Joint pain is specific to RA but lucky us, we get a form of it that nails our entire bodies. Often times my entire body just feels like one giant spasm so I have to breathe and do my best to relax knowing it will soon pass. I had two trips to the ER and paramedics were called once when this first happened to me a few years in to this disease but many years after I know exactly what it is so I no longer panic. But oh brother does it hurt !
Biofeedback and meditation can help to train your brain to accept this pain...at least it has helped me.
Tara Lynn, I am up to a 5k two to three times per week (power walking indoors) M/W/F. I need the day or days off after to recoup ! And by the weekends I really need the rest. I cannot do this all the time and could not do it without first taking a pain tablet. I weigh my choices though...if I don't take the drug, I cannot exercise so what are we to do huh? And oddly, cold weather (and we have had a doozie of a winter this year) doesn't affect my body as much as summer heat and humidity. We would always take vacations in the winter because of this.
Well, that's it, then. I was wondering if I should ever get back my gym membership. Sigh. I, too, worked out 3-4 times a week, and did weight training as well as Cardio. Lately, tho it has been making me feel worse. That and the fact that my elbows have been on fire. Doc said it was Carpal...which would be expected since I was a computer sys adm and work on a computer a lot. He didn't say it was connected to Arthur, tho. :)
I kept backing off and backing off on the routine until I finally told hubby I might as well not go, I'm going so light on everything. It was a waste of money and time...
Doc says to take hikes. (In a nice way). I love hiking, so I'm looking for places to go. He said stay off of pavement and sidewalks. Bad for our lousy arthritic hips.
Now I have to drive miles to get to trials, which is a bummer.
Kim
TaraLynn said:
I get muscle pain and I do not have fibromyalgia. I use to weight lift 3-5 times a week and stopped in the spring when my PSA started to get worse. I was getting burning in my hands, I could no longer hold the weights. After working out my muscles would hurt into the next day. I tried lifting lighter, but it made no difference. Even now I get muscle pain with any increased activity. The other day my calf's were sore from vacuuming the house. I also have a lot of tendon issues, bursitis in both hips, rotator cuff and shoulder issues. I see my rheumy in January and will be talking about all of this with her.
Hi All...thought I would give an update... I am now walking on average 5-6 k daily at least 5 days weekly. I've added weights again and doing amazing well! If I over do it I pay...for instance I spent a few hours out in the garden for a few continuous days and my hands (right especially) were swollen and stiff...my right pointer finger was dactaylitis however the pain with nothing like it was last year. So...the new treatment (Avara & Sulfa) must be working because I'm able to do a lot more then I have in a year. The burning pain I had in my hands and feet last year when I exercised is no longer a big issue. I still get pain in my feet and find it lightens up after walking a bit. My hands...if I over do it they hurt, so it's finding the right amount. Some days it hurts to get going...but amazingly after.... I feel really great. I'm thinking I may even get to run again one day <3
So I am now planning to get back on the ship in June after I see my rheumy. I'm not sure how it will go but it would be great if I could manage to work another year on board before having to jump to shore. I also fear saying to much because....sometimes I speak to soon and poof. But for now things are a lot better! I don't take anything for pain unless I have an intolerable flare that won't allow me to deal. I try to cope with the two dmards as I want to see if they are working...the avara seems to be making enough of a difference to have a fairly functioning life with less pain.
Kim, I have weights at home..kettle bells as well as dumbbells. We also have a bench, heavy bag and weighs in the garage but I'm not thinking I will be using that any time soon.
I lift light now and may slowly build my way up...but I have no desire to lift big heavy things at this time :-) Light weights will still keep you toned ;-) All the years I ran, I only lifted light weights as I found heavy lifting made me feel sluggish when I ran. I started lifting weights a few years back when I downloaded an app called fitocracy. I love the group and am back to logging points...not as many as I once did but I'm alright with that. Just to keep moving is wonderful! For me one of the good things about living on a small Island is the hiking trails. We have trails less then a 5 min walk from our home. Don't give up hope!! Hopefully with disease management you too will be able to do more! ;-)
titianmom said:
Well, that's it, then. I was wondering if I should ever get back my gym membership. Sigh. I, too, worked out 3-4 times a week, and did weight training as well as Cardio. Lately, tho it has been making me feel worse. That and the fact that my elbows have been on fire. Doc said it was Carpal...which would be expected since I was a computer sys adm and work on a computer a lot. He didn't say it was connected to Arthur, tho. :)
I kept backing off and backing off on the routine until I finally told hubby I might as well not go, I'm going so light on everything. It was a waste of money and time...
Doc says to take hikes. (In a nice way). I love hiking, so I'm looking for places to go. He said stay off of pavement and sidewalks. Bad for our lousy arthritic hips.
Now I have to drive miles to get to trials, which is a bummer.
Kim
TaraLynn said:
I get muscle pain and I do not have fibromyalgia. I use to weight lift 3-5 times a week and stopped in the spring when my PSA started to get worse. I was getting burning in my hands, I could no longer hold the weights. After working out my muscles would hurt into the next day. I tried lifting lighter, but it made no difference. Even now I get muscle pain with any increased activity. The other day my calf's were sore from vacuuming the house. I also have a lot of tendon issues, bursitis in both hips, rotator cuff and shoulder issues. I see my rheumy in January and will be talking about all of this with her.
Thank you Karen. Moving has really helped, even though it may hurt to start sometimes :-) Good for you to get out and walk, that is exactly what I did too. When the PSA increased last spring I was lucky if I could walk a mile....I had really bad fatigue as well as horrible side effects on the meds at that time. Now I am on a new combo and the fatigue has lifted, the pain level has decreased and I am able to do more which really helps me mentally too!
I wish you the best with the physical therapy!
Karen said:
Tara. I admire you. I try every day to walk some kind of distance. Trying physical therapy. Hope it helps
That is wonderful Erinsmum! I wonder if it is the humidity? Maybe in the winter its a dry cold? We live on the Coast of British Columbia on a small Island and the winter, fall and some of the spring is really damp and cool. We tend to live in the fog for a few weeks, usually sometime in Jan/Feb It's a cold to the bone can't warm up kind of cold :-( Even in summer it can be fairly damp, almost always a dew on the ground. We also try and take vacations in the winter...to somewhere warm and tropical ;-)
Erinsmum said:
Tara Lynn, I am up to a 5k two to three times per week (power walking indoors) M/W/F. I need the day or days off after to recoup ! And by the weekends I really need the rest. I cannot do this all the time and could not do it without first taking a pain tablet. I weigh my choices though...if I don't take the drug, I cannot exercise so what are we to do huh? And oddly, cold weather (and we have had a doozie of a winter this year) doesn't affect my body as much as summer heat and humidity. We would always take vacations in the winter because of this.
This is a great thread! With DDD for over 20 years I know that I generally feel bad, but without exercise I feel hellish. About a year ago I switched to a standing desk (with a very good foam mat on the carpeted floor) because I just felt like I would DIE if I sat in a chair for one more day. I stand all day when I feel good. When my knees are aching I switch between sitting and standing. I go to the pool and jog in the morning, then stretch in the hot tub afterwards. If I skip the stretch I am stiff all day long. I have found that moving all day in some fashion is essential. I timed myself this weekend while sitting in a chair for 3 minutes while I waited for the timer to go off on the oven, and was totally stiff in my heels already. Three minutes! Intentional fidgeting has become my friend. Sitting or standing I just keep moving and wiggling everything I can so that my feet, heels, back, hips and neck don't just seize up. Now with my fingers and toes burning it has distracted my from my stupid old lady spine. I am still figuring out the limits with PSA since I can overdo and have my knees and ankles get sore.
About a year ago I switched to a standing desk (with a very good foam mat on the carpeted floor) because I just felt like I would DIE if I sat in a chair for one more day.
Hi, I've heard of those; wish we had them when I was working, I think I'd have preferred that over a chair, at least part of the day!
I've ordered really nice orthopedic walking shoes (has springs in them, by Spira), can't wait till they get here. I think that'll help a lot as far as the joints go.
