Newly DX - need some coping strategies!

General
1

Hi - I was DX in April 2012. Been on Enbrel, NSAIDs, and MTX ever since. The disease has been going on for a long time. I have arthritis in SI joints, neck, lumbar spine, shoulders and where the ribs attach to spine. I get enthesitis flare in wrists ankles and feet at times too. The meds help alot- but there are still some really bad days. I have had about 4 prednisone tapers since April. I need some advice on non- drug coping options. More pain meds are not an option since I cannot take anything with codine/morphine in them.

I feel stupid but I am considering asking my doc about using a cane as needed for flares. Typically my left SI flares up and sends shooting pain down my leg. I have to walk 2 miles round trip to my car at work 3 times a week so I am thinking that might be helpful. Shopping is the worst too- standing hurts - walking isn’t so bad!

What do you all do? Anyone use a cane at times?m suggestions?

2

Hi, sorry to hear that you're in so much pain. Like you I don't want to take too much pain meds and tend to save them for my REALLY bad days.

I've tried heat packs (helps sometimes) ice (helps sometimes) TENS machine (helps sometimes)

Gentle stretching on even the BAD days, stretching gently thru the pain helps even tho it hurts lol

Even on bad days when I'm resting a lot I make sure I get up & force myself to move around a bit at least every 20 mins to half an hour.

I just went and bought a cane from our local pharmacy, I use it when I have to and ignore it when I don't really need it. It has been a lifesaver at times. I didn't think to check with my doctor- just did it. Now I keep one permanently in my car & have another at home .

Bought myself a couple of high stools to use in the kitchen & laundry for those days when even just standing for more than 2 minutes is agony- I find taking the weight off my feet & knees even for a minute makes a big difference.

Oh, and lately, a few glasses of wine....

3

Hi Sharon,

My Chiropractor is a great relief to me, not sure if you are fused, but if not you may want to consider a DC or perhaps acupuncture and massage therapy. Those would be my first thoughts, then maybe lidocaine patches, they can be cut to fit. Gentle stretching is so beneficial, even if done from a chair or bed, it all helps!

If my wrists were better, I would already have a cane. Right now if I am trying to decide if my wrists have gotten worse, or if thanks to the Enbrel, my back has gotten better, hope it's the latter!

Hope this helps, if I come up with anything else, will surely get back with you!

Wishing you well,

SK

4

Hi Sharon,

I am working on non-pain med coping strategies too. For shopping, a trolley is great. If your hands and wrists hurt as well as hips, knees, ankles and feet, you can often rest your forearms on the handle (yes you look like a dag, but oh well). I have a little girl, so often take the pram, because it’s easier to manouvre, even though she often doesn’t need it anymore.

Carpark to work is harder. I’m guessing there’s a financial reason you can’t park closer. My Rhuemy suggested I see a podiatrist, and I have an appt next week. From what I gather, that’s more likely to help with knees and ankles than SI joints, but I suppose it’s worth considering.

Only today I too found myself standing in the pharmacy looking at the folding cane… (9 months from disease onset), but like SK, my wrists (and shoulders) aren’t going to play the game.

When I had a terrible flare (before meds), I just gave myself at least double the time to walk from the carpark to work, and as I’m in the cbd, there is actually a bench about halfway, so I stopped and rested a few times (the walk is about 500m one way).

Good luck :slight_smile:

5

You've gotten some great suggestions! For me, balancing activity and rest has been incredibly helpful, as well as being in tune with my body and knowing when I need to take it easy and when I can be more active. I have PsA in just about every joint and have spondylitis, including partially / mostly fused SI joints. I use two canes (palm grip due to the PsA in my hands) or a wheelchair as needed (which isn't much these days, which is amazing for me!) and have a handicapped parking tag which I use when I need to.

Why the long walk to work?

6

Thanks Everyone! At this point I am not fused and I don't actually have bone changes in my peripheral joints. The peripherals now are just enthesitis and that is actually under pretty darn good control unless I really get crazy with the activity level. The only bone changes thus far are in the back (neck and lumbar). The shoulder doesn't bother me too often on the meds, so maybe I will try the cane for the SI joint pain. For some crazy reason it seems that only the left gives me the worst trouble. I get the shooting pain effect!

The Doc of C sounds good too. Thanks for all the suggestions - keep them coming!

I have to find a way to balance out the activity - that seems to be the biggest challenge. I work on a military base several times per day, so that is why the car is parked so far away. There are never spaces any closer.

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First of all...................

Lets not confuse PsA and Ankylosing Spondylitis. They may occur together but they are different. I am one who has both, about 20% of PsA folks do. The AS bunch are a somewhat unique group.... They seem at war with everyone. They like to slice and dice everything into as little pieces as they can and blame the docs for not fixing it.

So a few facts....

FUSION is not painful. Think about it for a minute. 90% of spinal surgery involves fusion. So what IS painful? Its inflamation......

Meds that treat inflamation are good....

Meds that prevent inflamation are good.

Drugs that do NEITHER are bad.

Don't misunderstand me. There certainly are joint changes that can cause nerve irritation and thus pain. There isn't a pill that will change that.


The bodies natural reaction to INJURY is inflammation, Im gonna cut out a whole lot of phisiology. But your narco's create inflammation, so while they may knoxck you on your rear and make you not CARE about inflammation and cover up the pain, they will EXTEND a flare.

Rest will extend a flare....... (inflammation stays around)

So what is a flare???? Its simply an injury or event that has caused an increase in inflammation. Now if its an injury you have to determine what its is obviously if a bone spur is rubbing a nerve, thats one thing, but if we bent to far and tweaked something that's another. Could be the weather, gardening, pushing to hard what ever. The approach is to do what ever is necessary to get rid of the inflammation. Think here of elite athletes. None of them have EVER been sent home to rest. The are in the training room. Stretching exercising TENS, ice heat, massage, maybe droids and/or injections but NEVER pain medications for fear of AGGRAVATING the injury.

Now we can't afford a professional trainer but we can do all of those things and learn what to do for any particular flare. After a few years it becomes almost instinct.

The alternative is to become my sister plant yourself in a recliner "resting" and spending a fair amount of time bitching about doctors who don't "understand" or those who are plum stupid (imagine exercising this joint don't they know it HURTS) or "what do you mean work on stability. you have to have muscle to do that" Fire the docs before they fire you looking for one who will deal with the pain, so once its gone you can deal with the disease. (Course that can't possibly happen) and after 30 years of putting everyone through hell including siblings and mother who have it (and worse according to the scans) die on Christmas from liver failure caused by the drugs.

The ENEMY is inflammation. Anything to control it. Foods (will be different for everybody but there are some common ones) allergies (yeah, I mean hay fever type) body weight, driving to long, walking too far, bad posture. DEPRESSION etc. No war is a constant battle it is made up of a series of fire fights. No one who has won a war hasn't lost a few fire fights. No one (except maybe the French) have ever come out on top when the strategy is retreat.

Sorry if I seem unsympathetic - I'm not.

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Thanks for the clarification, tntlamb!!! I tend to not go to the extent of fully explaining how my si joint fusions due to AS combined with one of my legs being slightly shorter than the other, combined with the type of activity I do all day, plus PsA in the joints means lots of inflammation, which leads to extreme si joint pain. (And unfortunately I can't take any anitinflammatories, so my treatment options are limited. )

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I know you are getting some pretty good relief from the biologicals Nym. I have been wondering about the NSAIDS. I know some folks who couldn't take them but can tolerate the topical patch types as 95% goe directly to the joint as opposed to the "system"

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@xmasmumma - good point about saving the pain meds for when you REALLY need them. Tntlamb also has opined about this topic of pain killers. As far as coping mechanisms, here's mine not in any particular order:

  1. Don't complain - especially to loved ones as they weary quickly
  2. Pray - if it is in line with your spiritual belief system
  3. Visit this group often, glean from those that have been there, and ask questions
  4. Research the condition, but don't succumb to quackery and natural remedy claims online
  5. look into dietary changes if you feel so led
  6. stretch as best you can, as often as you can
  7. be kind to yourself and learn to say No when you need to
  8. get rest, but don't become motionless - you will Rust yourself into immobility
  9. Hug and be hugged
  10. pet your dogs, cats...whatever pet that owns you
  11. laugh

This is what I'm trying and I still have some really awful days, but all these make it a bit more tolerable.

Blessings and Hugs from a fellow newbie (dx'd this Feb).

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Nice List!!!!!!

Incidently I have a stash (legal) of Oxy and my very favorite of all (If you need a muscle relaxant) valium

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I think this is a REALLY good thread to remind us all that there is heaps we can do to help ourselves without turning into drug zombies!

Lets face it- we are all stuffed and will never again be the people we were (sports/exercise etc etc) but we can be better in a different way - I have certainly learntto be more patient, tolerant and slower!

But oh, DMaraJade- bitchin & whinging is one of my favourite past times....

(and yes, TNT I too have my stash)

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Sharon 99 have you considered a walker with a seat?They are relatively inexpensive and useful if you need to sit down . Easier to use than a cane and helps prevent limping . I have found that using a cane can make my hand and wrist hurt but a walker seems to be easier on the body parts plus I stand up straighter.

In reply to TNTs post

Rest will help settle a flare.While mild exercise and stretching is good for you rest is one of the most improtant things we can do for our bodies epecially when we are in a flare and suffering in pain. By no means does "REST| mean to stay in bed or the recliner all day.

There are pills that actually do help nerve pain.

Not all meds, that do not prevent inflamation or treat inflamation are bad.

I know athletes that take pain meds for injuries.

Narcotics will not extend a flare nor do they create inflamation.

This much I know is true.

TNT I am sorry your sister has passed away.

.

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Thanks - I never take narcotics. Strongest pain med I ever take is Tylenol. I already take a daily NSAID for inflammation, so Tylenol is the only other thing I can have. I also have wicked bad migraines at times and any type of narcotic sets those off. Also, my Mom took the narcotic route early in her disease and it didn't really help - it just kept escalating to the point where she is stuck with them now.

15

There are drugs used to treat nerve pain: Duloxetine (Cymbalta) and milnacipran (Savella). Older drugs include amitriptyline (Elavil), cyclobenzaprine (Flexeril) or venlafaxine (Effexor). but they aren't effective unless there is a central nervous system trigger as they are designed change some of the brain chemicals (serotonin and norepinephrine) to help control pain levels. There isn't much evidence to show they are at all effective with the kind of pain caused by PsA or AS. But the side effects of them certainly do allow some folks the ability to sleep. Pain management for our family of diseases has certainly progressed from the Florida Type pain management store fronts which are becoming ever increasingly regulated, closed down, or investigated.

Just about every study done recently has come to the same conclusion CNS drugs and especially narcotics makes folks with rheumatic diseases hyper pain sensitive over a what they are finding to be a much shorter period of time than once thought. Its becoming ever increasingly difficult to get these drugs from Rheumys and almost as difficult from Pain management centers. Even for very acute cases (surgery, traumatic injury etc.) they are getting people off them faster and into alternatives.

Didn't say we never use them, but they are so far down the list they don't even count. And yes they have been prescribed for athletic injuries. But is considered a very grevious ethics violation to use them to allow an athlete to perform.

Of course you use common sense with "activity"

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Thanks - I am seeing the Doc tomorrow and I am going to ask about using a mobility aid like a cane. Thank God I am blessed with a pretty strong pain tolerance. I don't want anymore drugs - I can't take most of them anyway. I am willing to accept the fact that this hurts and has for the past 10 years and that will never change. I just need to keep functioning at the same level or as close as possible. Since I take anti-seizure meds to keep those at bay I can't take any of the drugs in the CNS category either. I have taken a small dose of Flexeril at bedtime in the past and I didn't see much difference.

Swimming in my pool helps alot and as long as I keep moving most days aren't too horrific. Just need some help when I need to do a lot of shoppings/errands and during flares to get me the 3 mile round trip to work under control.

I am really active and pretty darn healthy except for the arthritis and the migraine/seizure disorder - so I got that going for me. I know moving works - I had to be down for 2 days when I had bad bronchitis and it nearly killed my SI joints!

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I wish they made a water proof puter. I think if a could put a recliner in a pool. hold my self in with seat belt to keep from floating to the top, I could double my productivity. Or perhaps weightlessness? Getting rid of gravity does help.......

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I can just visualize this, thank you for the chuckle, lamb, I needed one. Heard from our buddy last night left you a message.

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I was diagnosed in July 2011. I have found different coping strategies for pain that help, like heating pads, physio reiki, acupuncture, massages, and stretching. However, for me, and of course everyone is different, changes in diet have helped a great deal. Don't get me wrong though, I do still have flares (dealing with on currently) but I do think that changes in my diet have helped a good deal - especially for the skin. :)

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If you have any pain in you wrists a walking staff used by hikers is more comfy for me. I got one that folds up from Amazon. Don’t be ashamed GI you need a cane. Or a walker or whatever helps in the future. I have used them all… For foot pain I keep a plastic soda bottle in freezer filled with frozen water. Place it on floor and use bottom of foot to roll it back and forth. I find comfort from soaks in Eason salts to cope sometimes. Find a few minutes each day that you can enjoy. For me it’s reading, and opinionated schnauzer and a solemn stately 13 inch tree growing in my office, we chat daily.