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  • #301909
    Tiff
    Participant

    I've been having quite a few good days, and I saw my doctor.  He was pretty happy with my progress.  He had a few suggestions, which I am adding in to my routine.  He wanted me to try to exercise if I felt like it.

    Well, I walked for three days in a row, plus did stretching and a few gentle exercises.  It felt great, no problems.  The morning of the third day I was sore, but I walked again.  By the afternoon (yesterday), I could barely move!  I hurt everywhere.  It felt worse than I recall feeling after learning to ski or after horsebackriding when I had not done it very often.  Those two things make you so sore – they make you work muscles you did now know you had!  This was worse than that, and my left knee and right elbow (how's that for symmetry?) were clearly the same joint pain as usual.  The rest was hard to tell.

    My question is: is that just being really, really pathetically out of shape (haven't done this for a long time – almost a year), or is it that it caused a herx or a flare?  And I was in pain all night and slept till nearly noon, but now I am much, much better.

    What have you experienced with exercise?  Does it make you herx or flare?  How do you “exercise regularly” when you are dealing with this?

    Any input is welcome!

    #326632
    tbird2340
    Participant

    Well.. I'll just say this.. About a month and a half ago I felt great! Felt like I didn't even have RA.. Started to exercise and work out again.. I got in a solid one – two weeks.. Had the normal soreness from being out of shape etc..

    Then, all of a sudden, the same as you (but not as bad I don't think). I could move etc but I felt like crap and have never felt the same since. I stopped pretty much all exercise and still haven't felt better.. Pretty much all my joints hurt (not terribly bad but all give me pain)..

    Not sure if the exercise did it or what but sure did / does bum me out..

    #326633
    Tiff
    Participant

    Bummer, Tbird.  It looks like you are still very early in your AP treatment.  Perhaps this is just a phase.  I've been at this a lot longer.  Thanks for the input.  I hope you rally!!

    The strange thing is that the pain is very transient – coming and going from many joints very rapidly, like 12-48 hours.  Went to bed again last night (about midnight) hardly able to move, but am okay now (2pm).  I'm going to gently do it again.  I will find out if this is something I can work through or if it is a blockade that I can't get past.

    I should add, and perhaps get more input… I have an infared sauna (thank you Diane!), and I have been doing that, too.  I love it.  It is sooo wonderful, and my skin seems very happy with it so far, but… could it be shaking things up as well?  If it is a herx, then it will be worthwhile to work through.

    I probably shouldn't do these things at once, but… you know how it.

    Will let you know what I find out!

    #326634
    SusanSD
    Participant

    Hi Tiff,
         I do think that exercise does stir things up a bit. It is so hard to tease apart what's the disease and what's a herx. I guess for me, I know my herx symptoms are usually in one location, so when I exercise, I get itchy or get delayed pains in that spot. If I don't exercise, I may still get the itch or pains, out of the blue, so it is difficult to pinpoint. Add to that the variables about diet, sleep, stress, and it really is hard to figure out a pattern. Sorry I couldn't be more helpful.

    #326635
    lynnie_sydney
    Participant

    Tiff – glad you're feeling better. Think you are more likely to have had a flare of symptoms. A classic definition of a herx is a direct response to abx treatment. I have to be careful with exercise. If I overdo it, I get symptoms. Take it easy and so glad you're feeling better – I know it's been a long road for you. Lynnie 

    Since the Herxheimer is a drug related flare, treating the symptoms and allowing the flare to run its course will enable the antibiotic to attack the offending microorganism and hasten recovery. Treat the pain symptoms with pain medications which don't block the effect of the antibiotic and which don't suppress the immune system ( i.e.”>

    [/color]https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/91.html

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #326636
    Maz
    Keymaster

    [user=45]Tiff[/user] wrote:

    My question is: is that just being really, really pathetically out of shape (haven't done this for a long time – almost a year), or is it that it caused a herx or a flare?  And I was in pain all night and slept till nearly noon, but now I am much, much better.

    What have you experienced with exercise?  Does it make you herx or flare?  How do you “exercise regularly” when you are dealing with this?

    Hi Tiff,

    I was just going through some articles on the main site tonight and fell upon this one that I think you might find interesting as it relates to your question about exercising and herxing/flaring:

    https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/124.html

    Dr W lists these possibilities that he has seen in practice as causing a herx reaction:

    “Anti-infective therapies or approaches that can feature the JH

    [align=left]

    • Antibiotic/antifungal therapies < LI>Oxidative therapies [/*:1uk11l8i]
    • Ozone [/*:1uk11l8i]
    • Ultraviolet Blood Irradiation [/*:1uk11l8i]
    • Hydrogen Peroxide therapy [/*:1uk11l8i]
    • High dose vitamin C therapy [/*:1uk11l8i]
    • Induced Hyperthermia [/*:1uk11l8i]
    • Sunlight exposure [/*:1uk11l8i]
    • Various herbal therapies [/*:1uk11l8i]
    • Bee sting reactions [/*:1uk11l8i]
    • Iodine reactions “

    [/*]
    [/align]
    What is interesting is that Dr. W. feels that anything that may raise the body's temperature can elicit a herx – makes sense when pathogens thrive in some temps and not in others. My LLMD told me to never use cold compresses, only heat, as the organisms have difficulty surviving in higher temps. Hence, the body's reaction of producing a fever during an acute infection and also, interestingly, during a herx. This is a possibility with exercise, if you're really sweating it up and/or you happen to be someone who detoxes really slowly. Sitting in a hot bath for too long has elicited a herx for me the following day.

    I'm afraid when I was really bad I couldn't do much of anything…just some really gentle PT to increase ROM, so it wasn't like I was sweating it up much. I did find as I began walking on the tredmill for longer periods, however, I always felt a bit rough afterwards, which didn't produce much incentive to do it very regularly! I can't tell you if it was a herx or flare situation, but it did occur for me, too. Now I'm on the up and up, I'm working out at the gym for an hour at time and I am producing a sweat (sopping wet hot flashes actually!), but I'm feeling pretty stable afterwards with no ill effects now. So, hang in there, Tiff…just do what you can manage and don't push things. You'll get there, as I have done.

    One thing that really helped was to buy one of those “Stamina In-stride Cycle” portable bikes from Walmart. It can be used as a leg or arm cycle and was Linda's great find! When I found it hard to exercise, I just propped it in front of something like a coffee table (so it wouldn't slide across the floor) and then I'd cycle while watching TV. Gets the circulation going and you forget you're exercising when you're engrossed in a good show!

    Peace, Maz 

    PS. Here's the link to the portable cycle, if you're interested…very reasonable at $24.77…I've burned some miles on mine 😉 and great for the knees:

    http://www.walmart.com/catalog/product.do?product_id=7680165

    #326637
    stwig
    Participant

    About a month ago I was feeling pretty good in my shoulders and hands so I decided to do a little working out with some light arm exercises. The first two days were fine, no pain or evil herx. After the third time my shoulder exploded with pain. I don't know if it was the worlds worst herx from stirring things up, or if it was a flare. I only know it was super painful, so I have been very reluctant to go back and try again.
    It is such a catch-22, we need to do some exercise to help our bodies get healthy, but any exercise we do creates such pain that we don't want to do it :headbang:

    Starla

    #326638
    Tiff
    Participant

    Thanks everyone for your input and your experiences.

    It did occur to me that a Herx should be directly related to the ABX, but I did think of the heat as being a possibility.  I never run temperatures, even when I am sick, except I have a couple of times since starting the MP.

    What is interesting about this is the rapid cycling of the symptoms.  I am having things come and go within a 12 to 24 our period, which has made it possible for me to go ahead and exercise again each day (except one that was way too windy – March!).  I have done the sauna each day, too.

    I've been in pain in various places each evening, but it resolves rather quickly, and ibuprofen helps (not typical for me), and I feel just great while exercising.  It is hard to be careful not to overdo when it feels rather good!  Even the places that have been rather consistently a problem of late have felt better even while I have flared in some very different locations.

    For the most part I have not pushed exercising for an entire year.  I just felt that I needed to let my body take it easy.  That is fine, but I am feeling the effects of my atrophied muscles, and you know, you can replace joints, but you can't replace muscles!  It is hard enough to get back in exercise mode even for healthy people, but this has the capacity to really make you stop for good.  What happened to Starla's shoulder is more or less the same thing that I experienced.  It definitely scares you.  However, am pleased at how quickly it recovered and consider that a good sign.

    Anyway, I'm going to keep it up for now – as much as I am able.  Soon it will be so hot that I will have trouble getting out because of that!  Maz, the stationary “bike” looks perfect!  I was thinking of a small trampoline, but this is even better for now.  The info about the hot/cold compresses is interesting, too.  I used heat on my palindromic pains (just instinctive to me) when I first got this.  That was the only thing that helped, but at times the pain was so intense I could not even touch anything to the joint.  Later, when the pains became more mild, I used cold, and I have done that a lot lately.  It seems to fend off swelling better than heat – at least in my wrists/hands.  Perhaps I will avoid them, too.  Bummer, because it does feel good.

    Thanks again for the thoughts.  As usual, you all are very helpful!

    #326639
    Maz
    Keymaster

    Tiff, mini trampolines are really good for moving lymph and detoxing, even if you just sit on it and bounce. My my knees were so bad they probably couldn't withstand the bouncing up and down, though, and getting down to sit on it would have had me sitting there all day waiting for someone to lift me up! Cycling was definitely better for me to start out as it was less stress on the ol' knees without the body weight. Certainly got the circulation going and my PT seemed to think it was less likely to cause damage, too. Muscles are pretty forgiving (according to my old trainer) so they'll come back. 🙂

    Sounds like you're making some progress, Tiff…it's a long old road, but maybe the PRA pains are a good sign that the bugs are on the run?

    Peace, Maz

     

    #326640
    Tiff
    Participant

    I love trampolines.  We have a full sized one.  My son is very advanced on the trampoline.  He scares people, but it is just who he is.  If I took away his tramp, he'd be jumping off the roof.  *sigh*

    I've been using that a bit.  It feels very good.  The hardest part is getting on it (where did my hubby put the ladder anyway???).  But I am very light weight, so the impact to my knees isn't too bad.  Nevertheless, I did feel it in them.  You are right though, the pains have been much more PR again.  I think the 3rd ABX I'm on might be a factor, too, even though it was a good 6 weeks ago that I started it.

    The mini tramps are, of course, much more appropriate for this use.  The bounce is very, very different than on a large one.  I used one to get in shape back in my 20s, and it was very convenient and functional.  And I have read it is good for the lymph system and detoxing.

    I suspect the combination of things, tramp/walking/stretching/sauna are more than enough to have induced my issues.  In fact, I could have easily hospitalized myself!  LOL!  I'm off to try it again! :roll-laugh:

    I have a very nice bicycle, and I dearly hope to use it again one day!

    I'll keep you posted!

    #326641
    spacehoppa
    Participant

    Tiff,

    Just a quick note to say be very wary of using your full sized trampoline. I bought one a few years back and had a lot of fun on it (whilst on remicade and feeling pretty good) over a few days.

    But then I had a horrendous flare in my knees. The trouble was that I didn't have the RA in my knees much at all up 'til that point, but now they are the main joints affected.

    I don't care what they say about trampolines being low impact, they obviously can't be low impact enough for someone with RA!

    I have had constant trouble with my knees ever since. They are now by far my worst joints. Please take care!

    #326642
    Kim
    Participant

    [user=45]Tiff[/user] wrote:

    I should add, and perhaps get more input… I have an infared sauna (thank you Diane!), and I have been doing that, too.  I love it.  It is sooo wonderful, and my skin seems very happy with it so far, but… could it be shaking things up as well?  If it is a herx, then it will be worthwhile to work through.

    Hey Tiff,

    That's great that you've got enough energy to tackle exercising again. 

    Thought I'd mention that I herxed from the sauna when I first started using it.  The mini tramps are great……..I use one before the sauna to get the lymph moving.  They are also very good for osteoporosis.  You will notice an improvement in your skin from the sauna (a little added bonus).

    kim

    #326643
    Lizz
    Participant

    Tiff – I cracked and just bought an urban rebounder mini trampoline from a shopping channel. The reason I liked it was because it had a bar you could hang on to while you move, so it's more secure. I'm sure my puffy knees are going to love it!

    #326644
    Tiff
    Participant

    Hey all,

    I thought I'd give you an update as to my exercise/sauna routine.  I have been keeping it up for about 7 days now (except yesterday).  It amazes me how quickly I feel strength and flexibility improve, especially in my abdomen/back.  That is really encouraging.  My knees have recovered, too.

    Ruth, your caution about the tramp is well taken.  I would never suggest to someone with RA to use a full sized tramp (or maybe even a small one) unless they had been pretty active before the RA.  I have strong legs because I have done a lot of tramp before becoming sick and also ridden horseback a lot.  Riding is supper intense on knees/ankles.  I recall, in my twenties, riding around an arena for 15 or twenty minutes in “jumping position” while at a steady trot.  That is murderous if you have ever done it.  My knees and calves are very strong as a result, so gentle bouncing on a tramp is not at all strenuous to me.  I'm also all of 95lbs, so it just is not the same for me as it might be for someone else.  I totally agree that care is needed all the same.  Trampolines are dangerous things.  Some doctors hate them all together, and they left the scene of schools for many years, but are making a come back.  This is understandable to me because I have watched many people (of all ages) on our tramp and sometimes they scare me.  Trampolines will show you how completely uncomfortable people are with their bodies – with balance, momentum.  It can be striking.  My son is living silly putty, and does things no one else should ever try.  My hubby is that way also, but too big to keep up with my son.  However, my daughter and I need to stick to simple bouncing.  Anything else is just a bad idea for us!  Doing it within your ability level, however, can amazingly increase your coordination and is good for you (so just start slow and easy, Lizz).  I'm glad you brought this up because I do think there are much better exercises for most people than a full sized trampoline!  😀

    The cycle thingy Maz posted is an excellent alternative, but the online one from Wal-Mart is unavailable right now.  I'm going to keep looking as I think that is a great idea for the price and will give me something to do inside!

    I'm still having lots of roving joint pain, but nothing too persistent.  It still worries me though, and it also tends to make me feel like I am fighting a losing battle, if you know what I mean (especially the stuff in my hands).  But I am undetered so far!  😉

    Oh, and Kim, thanks for the input about the sauna.  I'm really enjoying it, and I do think it has caused some herxing, but not more than I can take.  Now if it will just stay cool enough around here so I don't feel guilty adding heat to my house!  My hubby is very sweet and told me not to worry about it and use it to my hearts content.

    #326645
    Maz
    Keymaster

    [user=45]Tiff[/user] wrote:

    I thought I'd give you an update as to my exercise/sauna routine.  I have been keeping it up for about 7 days now (except yesterday).  It amazes me how quickly I feel strength and flexibility improve, especially in my abdomen/back.  That is really encouraging.  My knees have recovered, too.

    Tiff, this is such GREAT news!!!!! Sounds like you're making huge strides now and soon you'll be leaping from tall buildings – okay, maybe not, but visions of Funniest Home Videos came to mind there with the trampoline!!! :roll-laugh:

    Sorry to hear you can't get the mini excercise bike online. My hubby bought mine from an actual Walmart store, so if you have one nearby you may be able to find one in their exercise equip dept. For the price, they're a terrific find and I have Linda to thank for that heads up (Linda where are you??? Are you okay???).

    I've advanced to the gym recumbant bike and am sweating up a storm a few times a week now, as well as doing some stationary leg weight exercises….leg presses, hip/thigh abuctors, hamstring, etc. I'm doing light upper body weights at home on my off-gym days, but need the gym equipment for my legs. I still use my portable bike when I'm watching tv, though…it just keeps the circulation going and I don't feel like a complete couch potato. What with all this exercise and the parasite cleanse, I'm hoping I'll finally be able to shift some of the excess baggage.

    So happy to hear you're really making some headway, Tiff, and maybe help with detoxing was an important key? YAY! So happy for you – some well-deserved good news at long last! 😀

    Peace, Maz

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