I've been thinking about this since a major flare caused by massage therapy (days before my Remicade infusion, she tried a new technique with my ok, and WOW, we won't be doing that again!). It came up again for me after taking a 3 mile hilly hike on Saturday. I was worried that my legs or my back would flare after the hike. Nope. My hands! I think it has to do with wearing a backpack, as on previous hikes I didn't have this issue. We're hiking again on Friday - no backpack for me!
I tend to think of flares as the prolonged worsening of symptoms over a short time and have noticed for the last 20 years or so ( before diagnosis) that I always flare at in July/August, thought I might have got away with it this year but the last few weeks has seen worsening symptoms and new pain areas.
Sitting too long, standing too long, laying in one position too long all effect my SI joints…oh and carrying shopping bags, I just don’t do that anymore my shoulders protest too much
I definitely need to pay more attention to what I am doing and any possible connection to my flare ups when they happen. I hope you have greater success on your next hike. Good on you to be able to make those connections.
I have most of the problems that Louise Hoy has noted. But I do not consider most of those flares. I think of a flare as a out of the norm type things that last for days or weeks or even months. Season change is the biggest flare starter for me. Fall being a bad one, Spring being a close second. Weather activities where there is a big change in the barometric pressure seem to cause me problems for days.
Stress seems to help me flare as well.
Typing make my hands swell as well as hiking. Hiking has been a bad one for me on my hands. My finger feel tight and feel swollen when I walk very far. Add the weight of a back pack on already stress systems makes it worse.
What's going on with my hands I consider a flare - it's the type of thing that isn't the norm and lasts for days/weeks. I have hiked successfully without a backpack without issue, so think the backpack is the cause. :)
There are times I have whole body flares (changes in season / storms), or partial body flares (like my upper back/shoulders/arms after a new massage technique).
FWIW no one with the Spondylitis form of this disease should EVER and I do mean EVER engage in any type of massage therapy or spinal manipulation. Osteophyts can develop pretty quickly. that "flare" can easily become permananet paralysis or nerve damage. While paralysis is unusual nerve Damage is not. (It occurs all to easily anyway) Once it occurs there is not thing one you can do about it. I know the certified program here says NEVER to their students.
With PsA even without the Sponylitis type we form syndesmophytes which are a form of osteophyte that forms at the insertion point of tendons manipulation of these can and will cause permanent pain (especially the shoulders and hands). Occasionally surgery can correct it. Syndesmophytes are caused by inflammation but are also a gift of Osteo Arthritis.
Is this one of those times, I'm being harsh and insensitive? Maybe. This one form of alternative therapy we should absolutely avoid. Yes I still have massages but they are very limited................
I am not sure which items are PsA or just age related. But when (and I stress when) I hiked which I did a lot of earlier in life I did fine. Over the years I have slowed to a point where I can not even walk very far. I use to carry 65 pounds of camera gear and hike several miles into the backcountry of Yellowstone NP and watch wildlife. This was up and down hills. Now I can not pickup and carry my smallest camera. I noticed as I hiked up hill when my heart was pumping my fingers would tingle. Then it became worse and they started to swell as I hiked. Then it got so that I could not carry any thing. It go so that I could not walk very far. Now I cannot carry a dozen eggs from the back of a Walmart store to the front of the store. This has become my hikes now and they come with there own challenges. I now use those riding carts that have a flat spot on one of the wheels so that you get this thump every rotation of the wheel. I walk when I can but it's not often. My wife will push the cart when she comes with me. But I get frustrated with this because she will walk off and leave the cart. I am left to guard the cart while she is gone. I can not stand there for long and will try to push the cart. Big mistake. So now I just walk off with her. She still leaves the cart behind (this bugs me to death, I hate it when I have to go around a unattended cart). They get left in the middle of the isle. Sorry I am rambling.
That’s funny, Nym. That is how I was diagnosed. I had my first huge flare after a massage. It was so awful because I had paid to make it happen, and massage used to be one of my favorite things. I was certain I would have to give it up. I found that I can still get one, as long as I stay away from deep tissue massage, which of course is my preferred technique. But, some is better than none, and I find I am much more sensitive than I used to be. My therapist can use light pressure and it still feels pretty deep to me! It’s better for her that way, and easier on her hands. I guess its turned out to be a good thing.
I find that overdoing any activity will spur a flare for me, even if its just driving, or sitting in the same chair all day I’ll end up with the same flare as I would have gotten from over enthusiastic gardening!
I didn’t read this before I posted. I 100% agree. I still get them, but they are much different than they used to be. I have an RN who does mine. She is also licensed as a massage therapist.
I do want to make it clear to everyone that I already understood this info before trying to find someone who would work up a plan for me. But that doesn’t mean that I am not putting myself at some risk.
tntlamb said:
FWIW no one with the Spondylitis form of this disease should EVER and I do mean EVER engage in any type of massage therapy or spinal manipulation. Osteophyts can develop pretty quickly. that “flare” can easily become permananet paralysis or nerve damage. While paralysis is unusual nerve Damage is not. (It occurs all to easily anyway) Once it occurs there is not thing one you can do about it. I know the certified program here says NEVER to their students.
With PsA even without the Sponylitis type we form syndesmophytes which are a form of osteophyte that forms at the insertion point of tendons manipulation of these can and will cause permanent pain (especially the shoulders and hands). Occasionally surgery can correct it. Syndesmophytes are caused by inflammation but are also a gift of Osteo Arthritis.
Is this one of those times, I’m being harsh and insensitive? Maybe. This one form of alternative therapy we should absolutely avoid. Yes I still have massages but they are very limited…
That is interesting. My dream has always been to get a nice LOOONG massage. My daughter rubs my hands and feet sometimes and occasionally my neck and shoulders. Shes pretty gentle. But sometimes I do hurt too much to be touched. I have psoriatic spondlyitis....I would NEVER see a chiropractor....my entire lumber and most of my neck is all fused. Don't wanna go crackin' anything there.
I will take your word fort it... If there is a risk....especially with my neck...I will avoid it. tntlamb said:
FWIW no one with the Spondylitis form of this disease should EVER and I do mean EVER engage in any type of massage therapy or spinal manipulation. Osteophyts can develop pretty quickly. that "flare" can easily become permananet paralysis or nerve damage. While paralysis is unusual nerve Damage is not. (It occurs all to easily anyway) Once it occurs there is not thing one you can do about it. I know the certified program here says NEVER to their students.
With PsA even without the Sponylitis type we form syndesmophytes which are a form of osteophyte that forms at the insertion point of tendons manipulation of these can and will cause permanent pain (especially the shoulders and hands). Occasionally surgery can correct it. Syndesmophytes are caused by inflammation but are also a gift of Osteo Arthritis.
Is this one of those times, I'm being harsh and insensitive? Maybe. This one form of alternative therapy we should absolutely avoid. Yes I still have massages but they are very limited................
I don't really think I have flares. Because I have not been officially diagnosed and am in no kind of control whatsoever. But I am in the process and hopefully can get some help soon. But everyday is bad for me right now. Mostly because of the SI joint pain and extreme stiffness. I occasionally have a good day but that rarely lasts more than 1 day at a time. But I often have a couple of really bad days in a row which I think is totally unfair!! If I get only 1 good day, I should only get 1 bad day to balance it all out.
I find that if I have a lot of cleaning to do for a party or something, like when I shampooed my rugs. I was so sore and shaking. My whole body was on fire and I was in so much pain I wanted to just cry. I will not do that again. It was soo painful and the next day all I could do was sleep and sit and relax I was toast.
That is so interesting, Lamb. I have found that Swedish Massage is good for my symptoms, but I would love additional info on this if you have it, so I can share with my massage therapist. I have instinctually shied away from chiropractic over the last few years. Just the thought of someone cracking or twisting my neck makes me feel woozy.
tntlamb said:
FWIW no one with the Spondylitis form of this disease should EVER and I do mean EVER engage in any type of massage therapy or spinal manipulation. Osteophyts can develop pretty quickly. that "flare" can easily become permananet paralysis or nerve damage. While paralysis is unusual nerve Damage is not. (It occurs all to easily anyway) Once it occurs there is not thing one you can do about it. I know the certified program here says NEVER to their students.
With PsA even without the Sponylitis type we form syndesmophytes which are a form of osteophyte that forms at the insertion point of tendons manipulation of these can and will cause permanent pain (especially the shoulders and hands). Occasionally surgery can correct it. Syndesmophytes are caused by inflammation but are also a gift of Osteo Arthritis.
Is this one of those times, I'm being harsh and insensitive? Maybe. This one form of alternative therapy we should absolutely avoid. Yes I still have massages but they are very limited................
Massage and PsA…
I just read this and now I’m really alarmed! I’ve been going in for massage every week for years and then wondered why I don’t feel all that much better. Sometimes I’m even worse but I definitely don’t get any lasting effect.
Now that you have brought this up I’d like MORE INFORMATION on this topic …
Why does massage do this to people with PsA?
Can you please refer me to some articles?
It’s all so depressing .
I’ve been wasting my money…and I’m on a fixed income, too.
Lamb I have never found you harsh nor insensitive, blunt and sardonic but never harsh. I enjoy massage and have the spondylitis type of psa. I do not get any deep work done and they have to stay away from my spine and neck. They mostly release the muscle knots in my shoulders and rub out any muscle knots and tension in arms and legs and elsewhere. I would love to see info if you have it but it seems to work for me though I would never let anyone near my spine.
over doing things pushing my limits beyond knowing that when i am done i will ache and be out of commision for 3 days at least. stress another key factor , mine is so bad at times i cant even walk but the drs have me on meds that do help at times i am able to get some thinsg done and minor things but ontop of the psa i have many other underlying issues also.
hip gives out legs decide they dont want to work sometimes my hip will lock up and it is painful hands swell weather is another condition that can cause some issues also the temperature in teh house makes a big issue also if it gets to cold i hurt like a dickens.
I too have had very bad experiences from massage to the neck and shoulder area. Excruciating pain the next day that only high doses of steroids could calm. Happened twice before I quit.
I have osteo and PsA. I used to take Humira, now on Embrel. I have learned that over doing it physically or even extreme mental stress can trigger a flare up. Pacing myself is best way to keep things normal (or close to). Wear good orthotic shoes definitely if you plan to be hiking and don't do too much per day. I have to be mindful of my footwear always and I need to rotate my shoes, not wear the same pair for more than two or three days to prevent problems. I work full time and have two kids, so I'm active. That's my best suggestion to keep pain, swelling and fatigue away. Always pace yourself.
My most recent mystery is pink eye, for the pass few months that won't clear. I'm told I have scleritis. I'm going for more lab work to identify other possible causes of eye inflammation.
Please I didn't say all massage for all PsA is BAD Specifically for Spondylitis its dangerous. The quality and training of massage therapist varies. As do the styles and types of massage. Consider this (from the massage therapy people;)
"When a client is having a flare-up, the affected cells are hyperactive. Thus, increasing energy or circulation in that area could aggravate the condition. Therapists must remember that psoriasis can also be triggered by skin trauma."
I'm trying to figure out what doesn't flare isn't on the edge etc etc..... (thats just me) From this article (a discussion beween therapists:
"Spondylitis is characterized by inflammation of the spine. The inflammation can lead to damage to the vertebrae of the spine.
"this can cause loosening of the ligaments that maintain the normal positions of one vertebrae on another. This is a dangerous situation because if the vertebrae suddenly slip in relation to each other, it is possible to permanently injure the spinal cord in the neck."
There is just to many variables to be comfortable with the thing. As I said I get massages, they are very topical (more like Swedish) an d related only to muscle spasm. You need to be cleared by your doctor and have very specific instructions, and I would suggest someone with much more training than a 6 month course from a school of massage (even if they have passed the certification exam)
