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firewatcher
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Does anyone get inflammation after "doing things?"

I weeded part of my front yard after getting a love letter from my neighborhood-nosy-association and now my hands/joints are swollen. I also have a supposed rotator cuff impingement from doing my Pilates/physical therapy (at first it was my knees.) Here's the problem: I'm not supposed to take ANY anti-inflammatories due to reduced kidney function. The only other things I've found to reduce swelling are ice and cherry juice concentrate (NOT as good as it sounds.) I'm doing the cherry thing, but if you've ever had a cold pressor test, you know I won't ice my hands again in this lifetime (talk about a major POTS flare!) I've been tested for RA antibodies and none were found. Do any of you have joint swelling with "normal" exertion?

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Sorry, I can't answer as I can't do enough to know if I get inflammation! I was curious, though, about the "cold pressor" test. I can figure out probably it was done by a neurologist, but what is it done for and what did it make your body do? Curiousity gets me too often!

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Sorry, I can't answer as I can't do enough to know if I get inflammation! I was curious, though, about the "cold pressor" test. I can figure out probably it was done by a neurologist, but what is it done for and what did it make your body do? Curiousity gets me too often!

The cold pressor test is an ANS function test (done at Vanderbilt University) where they stick one hand in a bucket of ice water (more ice than water) for one minute and measure your HR and BP response. I failed that one, BIG TIME! HR and BP shot up like a rocket! I had such vasoconstriction to this one that the "control" hand (not in the water) was just as cold and blue as the one in the water! :P

By the way, I was sitting on the damp ground or on my hands and knees pulling weeds...it was pathetic. ;) I wasn't doing much...

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Sounds like it wasn't a fun test at all! It's funny how many ways our body can overreact to such minor things. Although, holding your hand in ice water for a whole minute has got to hurt even a normal person, much less the whole systemic reaction you had because of POTS.

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Jennifer,

The short answer is YES. You and I have many similarities and this is another. Things have recently changed for me (more in a minute), but I used to get sooooo sore if I did any little thing. I remember having such a great time one day throwing a ball with my son & husband. We played catch in and around the pool for hours one day. I ran, jumped, launched in and out of the pool and felt great. OMG, the next day, I almost had to be admitted to the hospital. I was so sore and inflamed everywhere. This is just a tiny example of what I experienced regularly...sounds like you do too.

I recently (6/25) decided to see exactly what I was capable of and joined a local exercise "boot camp" for women. I had been putting on weight and getting increasingly symptomatic. It took oodles of courage & a phenomenal amount of hard work, but I seem to have re-set my inflammation point/sensitivity by pushing myself through phenomenal pain on a regular basis. I took oodles of alleve and didn't overly push it between classes (3 days a week.) Running (fast), jumping jacks, push-ups, jumping rope, lifting weights, etc. is all a part of this. I sometimes wear a HR monitor and I burn 800-900 calories a class. It is rugged.

I know it sounds impossible for folks like us, but it has helped me tremendously. I don't know the medical explanation, but I'm so grateful to have found this help. My newly strengthened muscles can easily do pretty rough yard and house work. My strong legs better return blood to my heart/head. I hardly pool blood at all any more. I have lost more than 15 lbs in less than 2 1/2 months. My BMI is 19, body fat 23% & I have to work to get enough calories in every day ;) I can't believe this is me at 47 y/o. It is the hardest thing I have ever done, but the results have been nothing short of miraculous.

I don't know if my med regimen had me in such a good place I could do this (partly YES!) or if this rigorous exercise has helped me get to a better place. I don't want my story to discourage you in any way, Jennifer. I only hope to encourage you. Cutting out all sugar and white refined flour has also helped me to avoid inflammation. I also sip iced green tea, a steady dose of healing antioxidants, until 3-4Pm (as I am afraid it will interfere with my sleep past that.) Not what you probably expected to hear, but try to push through the pain & keep as physically active as you are able at least every other day and see if you can't re-set your pain/inflammation threshold.

Gentle Hugs-

Julie

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Julie,

You at least have the option of Aleve. I can't take the anti-inflammatories! (that unknown kidney thing!) I hear you and want to push through, but it is hard when you can barely hold a fork and your fingers look like sausages! I had to cut back on my Pilates since more than once a week and I was falling down. I don't know if this is an autoimmune thing or just a histamine reaction (since histamine regulates inflammation.) I am beginning to react to my allergy shots again and they cut me back to half what I was up to. I've got joints freezing up and muscle soreness out the wazoo! What else have you done to stop the inflammation other than diet?

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Julie,

You at least have the option of Aleve. I can't take the anti-inflammatories! (that unknown kidney thing!) I hear you and want to push through, but it is hard when you can barely hold a fork and your fingers look like sausages! I had to cut back on my Pilates since more than once a week and I was falling down. I don't know if this is an autoimmune thing or just a histamine reaction (since histamine regulates inflammation.) I am beginning to react to my allergy shots again and they cut me back to half what I was up to. I've got joints freezing up and muscle soreness out the wazoo! What else have you done to stop the inflammation other than diet?

Dang it- I forgot about the anti-inflammatory prohibition. I don't think I could have pushed through without that ;) . And, you're right about the histamine too. I'm also on oodles of anti-histamines. Clearly, my med regimen allowed me to push as much as I have.

A few ideas: Can you tolerate aspirin? A low dose of that (81mg) has helped me tremendously (It works differently than other newer pain relievers) I also take a low dose of antibiotics (50mg doxycycline) daily- Dr, Rowe says they help with inflammation. (I began taking it for rosecea & found it helped my overall health/infalammtion & have kept it up.) The green tea & a multivitamin- chewable centrum- have been beneficial too. One last idea, have you tried atarax? It is a potent H-1 that really helped me turn the corner. It is equivalent to 2.5 zyrtec and it has some sort of sedative effect (for most people.) I take it at night and I have improved leaps and bounds since adding it to my other antihistamines.

Once you get your med regimen to get you more stable, THEN you can try to push through the pain to get to a higher pain/inflammation threshold.

G-E-N-T-L-E Hugs-

Julie

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I thought of one more thing. Have you ever had your prostaglandin D2 checked? When that's high, inflammation can be crazy. I think histamine plays a role with that one too. When mast cells misbehave, that can get high. I think it's a 24 hour urine test to check that, but they may also be able to do it via a simple blood test.

Julie

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I noticed that you're also an "allergy lady" like me. I also have kidneys take go back and forth in functionality, so I also can't take many medications for pain, like Aleve. Lastly, I've been through two sets of allergy shots (5 years first time, 3 the second), but had to discontinue them finally because I could never up my dosage due to the nasty side effects. I would wait for 1/2 an hour after the shot, go home, and then couldn't breathe. I also deal with inflammation in my fingers, especially.

I think it's great that some of us can maintain vigorous workouts, and I do believe they can really help. I've had to do more moderate exercise, like walking the treadmill or perhaps doing an elliptical trainer - that way I have handles I can hold on to when I get dizzy/off balance, and it's gentler on my system. Can't do much weight work...some light bicep/triceps and squats at home, but I really think that doing something, whatever you can manage, can help you feel better.

Good luck and let us know how you're doing! I actually find Pilates rather difficult, but like the stretching aspect of it.

Jana

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I have carpal tunnel in my hands that flares after things like the above mentioned. My pots neuro wrote a script for braces, due to the neurapathy we can be subject to these things more easily than the average jane/joe. Just another thought or with me there's always lupus lurking around the conner..... with my high ana...

Hope everyone is well this weekend. I'm ready to leave home, anyone got a room? Talk about inflammation, I'm inflammed from this blibiety bobitity boo thing called, living with pots........especially today! Time to go into hibernation, seems I can't do anything right and I'm a burden now that I no longer can drive and everything that I seem to say is wrong. I'm sick of saying I'm sorry all of the time.

By the way, sorry I added this but I'm having a melt down....

BellaMia~

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I have carpal tunnel in my hands that flares after things like the above mentioned. My pots neuro wrote a script for braces, due to the neurapathy we can be subject to these things more easily than the average jane/joe. Just another thought or with me there's always lupus lurking around the conner..... with my high ana...

Hope everyone is well this weekend. I'm ready to leave home, anyone got a room? Talk about inflammation, I'm inflammed from this blibiety bobitity boo thing called, living with pots........especially today! Time to go into hibernation, seems I can't do anything right and I'm a burden now that I no longer can drive and everything that I seem to say is wrong. I'm sick of saying I'm sorry all of the time.

By the way, sorry I added this but I'm having a melt down....

BellaMia~

Hmmm, when I was in college, I was dxed with carpal tunnel. They were scheduling me for surgery when my Dad put on the breaks and got me to a really good doc who dxed it as severe tendonitis of the shoulder from over-work impinging the nerves down my arm. Anti-inflammatories and physical therapy calmed that one down. I've always been prone to repetitive motion injuries. Unfortunately now, the anti-inflammatory thing is out until I get the kidney thing nailed down. I've been tested for lupus and it came back negative. My hands are less swollen today, I haven't done anything so I can get my wedding ring to spin. sigh....

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I'm seeing lots of commonalities between us all. I've dealt with sever carpal tunnel/tendonitis of my wrists. It was awful in my late 20's and occasionally roars now. Mack, my son, has it bad and must sleep with prescription wrist braces. Several joints of my fingers and toes are also perpetually swollen and sore.....

Makes me wonder if dysautonomia/allergy issues makes us more prone to this?

Hugs Bella! As far as I'm concerned you can do NO wrong!

Julie

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awwwwwwwwwwwwww thanks julie, that's just what I needed.... back to the real issue here i also have cubital tunnal in the left arm and a brace for that. I also have planter facitis and have braces for that also. The doc for that said that fibro may be taking over everywhere. I'm full of ouchies today....

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Julie -

WOW! I am SO impressed you did the boot camp. I am afraid I could not do it because of cfs/fm and unfortunatey pushing myself ends up being very counterproductive. But I wanted to tell you that I am so proud of you!!!!

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ohhhhhhhhhhhhhhhhhhhhhhhhhhhhhh my back is hurting sooooooooooooooooo bad need new back brace. the pressure in my back has really increased.

i better stop cause i hurt everywhere today.

bellamia~

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Thanks for the topic. I at least now know that I am not the only one that has inflammation after using my muscles, particularly muscles in the upper body. This also acts as a headache trigger at times. For me, I really don't think it is the muscles per se. I am leaning more toward a problem with the vascular system.

Have any of you read about Collagen Vascular Disease? It is related to problem with the Immune System.

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I have ankylosing spondylitis and I can get inflammation randomly, or from quite small exersion, whereas other times I can run and it wont flare up. I get both bcak pain, and periods of just general overbody malaise.

Id LOVE if someone did a HLA comparison of POTS patients.

Some doctors have evaluated how some forms of POTS may relate to an innate overactivity of an inflammatory response. C-reactive protein were found to be elevated in some CFS patients. Elevated C-reactive protein leads to a downregulation og angiotensin II receptors and a decrease in the biolavailability of vascular nitric oxide = constrictive POTS

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