Delayed pain,activity,aleve?
 

I think I have asked this before but delayed pain I have this problem so much. I sometimes am able to do a lot more in a day but usually the night and the next day or two are torture pain. Yesterday I did so much where at then end I thought I would throw up from pain and now today I even hurt so much. I don't get it and why this happens. There was a time where I thought if I was able to do at the time it was good but now I have to worry about the days ahead. Also I understand the concept of use it or loose it but at the same time where does the line get crossed from using it to doing too much. By pain doctors most have said the more the better and I know at Cleveland Clinic the day pain program it was basically all day on your feet as why I failed out but was wondering where it could damage rather then benefit. On a side note I have heard people talking about aleve here and never thought of this as vicodin sometimes does not even help when in a flare up but now am wondering if should try. I am concerned though with liver issues is this a concern with aleve and how often does one take this or is it just more as needed. Thanks and sorry so many ?'s

Hi Daniella,

I agree we all have to watch what meds we take that can effect our liver and other organs. Unfortunately for me I am on percocet daily. I try to take either advil or aleve in between the percocet. If I take 2 percocet, 2 hours later I will take advil. Now I'm not sure what your doctor would prescribe, this is just for me.

Also, I am sorry but I do not believe in the use it or loose it attitude. I have tried many different physical thereapists and every time I left crying and in bed for the next day. I think we are all different in our pain thresholds but I do not do well.

I have recently lost about 20 lbs due to pain and stress. The problem is I don't have muscle tone in my arms. I have been told not to use my right arm but I can't not due something. I think we all need to have our activities monitored as to what is right for our own bodies. You have to listen to yours to make sure you are not over doing any specific exercise.

Good luck! Linda

By the way, I have decided I am going to do my own exercises and try to get into a decent shape. The number on the scale doesn't matter as long as you feel good. My numer is lower than it has been in years but I don't like the way I look. So just be careful of the work you are doing and that it doesn't hurt you

Hi Daniella,

I also suffer from delayed pain a lot!!! I have been away with my nanan for a long weekend break and even though I didn't do a lot of walking as we took it really steady, I am paying for it a lot today and have had to miss school because of it!! It is SO frustrating as I know that if I have had a busy day, I will usually have to pay for it for the next few days and so many people just don't understand!

Someone on the MS forum has a signiture called 'For every day I play, I have to set aside a day to pay' and I can totally relate to it and think it applies to RSD and most other chronic pain conditions also!!

I haven't really found anything that helps with the delayed pain that much and my doctor told me that there isn't really that much you can do about it other than take some pain meds to see if they help a bit. I don't understand the delayed pain thing really either ... I guess it's just another RSD thing to baffle us!!!

I have been onto a Pain Management Program twice similar to the one you went on at the Cleveland Clinic. I had to have about 4 hours of Physical Therapy a day and then see Psychologists and keep active in the evening. It was SO hard and I honestly don't know how I managed to get up 5 days a week for it!! I remember screaming at my mum every day saying that I didn't want to go as I was just too tired and in a lot of pain!! The first PT Program helped a little as it got me walking short distances again although it didn't help with the pain but the second program didn't help at all. My PT's are thinking about admitting me into hospital again sometime soon to do some more intense PT with me before trying Botox as a last resort.

I understand what you mean about the liver issues from medications. I'm not on any meds at the moment other than Ketamine when I am in a really bad pain flare as none helped and both me and my doctor didn't see the point in me being on them if they weren't helping. It was only when I came off the meds that I realised that they really weren't doing anything for me. My Doctor was pretty concerned about the risk of organ damage also from long term use of meds, especially considering my age so thought it was probably best if I came off thme seeing as though they weren't doing anything.

I wish I could help you more but I can't unfortunately. Please just know that I totally understand what you are going through and I hope you feel better real soon!!!:hug:

Take care,
Alison.

Hi. Thank you for your replies and I am sorry for your pain too. A few ?'s see I rarely take as need meds though did last night I took darvocet. Some days though I am in crying pain. My doctor has started me on narontin again,cymbalta,serequel,and klonopin so am hoping something will make a dent. Lizzy so do you take aleve and or advil every day? I agree about having to monitor ones body and how it responds. I have learned to say NO through this with treatment because I know that when a mistake or wrong direction is taken I will pay for a long time in pain and there is nothing that can be done as meds sometimes I still am crying
Ali I can so relate as when I was at the clinic I called my mom crying too. I was 28 at the time but still the amoutn of activity was insane. I think they try to cramp a lot in a small amount of time but one can't always push through so hard. I think the day program was a good concept but needed revising and also more tailored to individual which will be hard. I also know and I am not your age but still being young I hear that a lot about meds. To be honest I have no idea any more what the answer is cause I do want quality of life but also don't want more health problems on top of the already. Thank you

Hi Daniella,
 

I agree with Linda on this. I donot believe in the, " no pain, no gain" theory.

I am in PT and Paul told me that if I leave there feeling worse then when I went in, then he is doing something wrong. I've been going for over a month and although he says I do have neck injuries and thoracic spine injuries, he has gotten me moving better and in less pain.

I think we really have to set our own pace. I know it's hard because there are some things we have to do but learning to say no is important. I haven't learned that yet either. When someone calls, I go.

As far as the pain program, I was offered that about 8 years ago. I told them no, I knew I couldn't do an all day program 5 days a week. Don't feel bad about not being able to do it, most of us here couldn't.

As far as the Alieve, I would worry about liver damage. It might be ok to use it for awhile until you get the pain down some but I've been told to use Tylenol only. I do have GERD though so I know I can't do the Alieve or aspirin.
It's not only the liver you have to worry about, it's the stomach.

Have you tried Lidocaine patches. I love them. They seem to help with the pain a lot, especially if the pain seems to be worse in certain areas. You can wear up to 3 of them.

Feel better soon.
Ada

muscle relaxers
 

I also suffer A LOT from delayed pain. My RSD started in my shoulder and spread to my neck and head. If I use my arms for anything too strenous I get horrific headaches. I am pretty sure the delayed pain we get is from muscle spasms. I take Methadone for pain, which works better than the Percocet I had previously been taking. I now use the Percocet for breakthrough pain (which, unfortunately, is often).

I was recently prescribed Skelactin (sp?), which is muscle relaxer. I used to take Soma, which was not nearly strong enough to have any impact on my pain. The Skelactin is so strong that it puts me to sleep, I took it yesterday afternoon after working in the yard and slept for several hours. It did help some, though. I usually only take the Skelactin when I go to bed, that is the first time I took it during the day, because it's so strong and makes me so tired.

Maybe a muscle relaxer would help with your pain. It might be worth asking your doctor about it.

Sandy

You guys are the best thank you. I needed the replies today I feel sad and alone in pain. Anyhow I think klonopin is the muscle relaxer. I am not up to the dose I need yet though as I have been trying to work on neurontin and cymbalta increases.
Debbie I am glad you like lidocaine patches but for me they increased my pain level as I can't have anything near my rsd area even a finger. I also tried the lidocaine infusion which increased my pain. I know that these OTC meds do both impact liver and stomach in some. I know some people take Asprin daily I think only a baby one though for heart health? I just mention aleve because someone did here on a post and I thought they had 8 hour ones instead of atking tylenol 4 hours.
Sme of my pain is like no circulation or the tightest rope around my ankle and then it feels like my foot got run over and like a swollen explosion feeling. The no circulation the neuro said is like a muscle spasm aka why klonopin. Feel better to all of you too. Too bad there is not one med with everything and only good side effects.

If you decide to use Aleve....I'd suggest the liquigel formula.

It works far better than tablets, for me. I guess because it is faster absorbed, etc.

I use Aleve for my arthritis pain, and the new Liquigels may allow you to get by with lower doses like I do. I don't use it every day, and sometimes not even every week. But it is much better for me than even 800mg ibuprofen! One cap of this new Aleve 220mg = 800mg of ibu for me!

Chronic use of NSAIDs increase the risk of heart attacks. Aleve is naproxen and is considered the lowest risk of the bunch, but it is still a risk. All NSAIDs have a risk of GI bleeding. So taking every day, and/or at high dose increases this.
The liver and kidney effects are less common than the other two but do happen.

Nsaids
 

I can't take them, just one ibuprofen(advil) and within 45 minutes to an hour, it feels as if I'm going to puke blood, very painful. For almost a week after, I must have food constantly in my stomach or my ulcer acts up. (guess it's an ulcer) I found through trial and error that percocet and soma when combined had lower needed dosages and better painkilling properties, as well as fewer side effects. (didn't need as much percocet, which made me nauseous when I took enough to settle the pain) Also on serax, a tranquilizer, and the three combined have made life bearable, with very little sleepiness or other effects. As the pain increased, and I got diagnosed properly, I needed to be put on long acting percocet(oxycontin) and for some reason I needed welbutrin for depression. I consider myself blessed as the meds I'm on have very few side effects as compared to some of the newer drugs, ie neurontin, etc. If your pain continues to increase, you may want to try low doses of a combination of painkiller, tranquilizer and muscle relaxer, for as you are fairly young, the effects of the new meds might be very contraindicated. Also, using low dose multiple drugs have fewer nausea problems. Please research any meds before you use them, the health consequences can be disastrous, and if it's a choice between physical addiction or liver/kidney/whatever damage, well, always pick something that has the lowest risk. Having RSD is bad enough without having some other hateful problem. God Bless ya young one, and all the rest of us as well. Later, Smoke

Managing rsd, is an hour to hour ordeal, often.
About the "use it or lose it", we all have delayed pain when we go beyond or normal activity levels. UioLi is not meant that we need to lift weights and jog 20 miles/day!
It simply means, that sometimes you hafto work through the pain and stiffness, and loosen up. I myself wake up in pain, and feel better as the day goes on, (if I'm not being too physical). And, my meds eventually kick in.

As far as Aleve, I merely recomended that to DEW, who was having a bad day on Sunday. It's just as a "change up" strategy. Sometimes, when nothing seems to help for the pain, we've got to change our situ. Weather it be stressors, temperature, (sometimes a hot bath/sometimes a cool shower) positional, humidity, meds not working is what I recomended the Aleve for.
Tylenol and Motrin are both useless to me. Tylenol hurts the liver (the FDA is now calling for a stricter warning for Tylenol), and Motrin just makes me ill.
Aleve seems to be the best choice, for me. (Find which one is best for You!)
And, if my meds aren't cutting it at one time or another, I take two.
And, they often help!
Simple as that really.

Good feelings to All!

Pete
Asb

Thanks again. I got the reg aleve but Mrs D I will try the one you are talking next time. I took 2 yesterday iafter the meds like vicodin for a break but did not see much relief. I have no clue. I just overdid it and combo of cold rain I think made me worse. I have been trying to find summer clothes and putting my leg in and out of pants is a killer. I have a pain apts next week and am going to ask about other as needed meds. I thought my new combo of meds neurontin,cymbalta,klonopin,serequel but it is not now. So frustrating but I am not on full doses. Hate having to worry about every factor in life. Trust me I went a year plus with no meds other then maybe a few vicodin through the year of this cause I tried so many and don't want more problems if they were not helping. Then it got to the point a few months ago where the pain is just too much and my life is so small so I started to do procedures which made me worse and now meds. I have had hgh liver problems and at what time they though pancreatitis but it was before my rsd and not my liver results have been better but it is a concern but at the same time when one pain comes on strong it seems like I care less about that. Ugh thanks again

Hi Daniella,
Just looking over what you wrote, I'm very sorry that your pain is so severe.
It doesn't seem to me, that you're on any kind of real "pain" med.
Neurontin can help (I've never used it, but it seems an adjunct to opana or methadone, from what I know),
Cymbalta, is an anti depressant, that has some pain relieving qualities.
Klonopin is basically long acting valium.
Seroquel is an "Atypical", and you should google this one. It's very over prescribed for "off label" use, for instance, sleep. It's NOT a sleep med, it's for BiPolar disorder and severe mental illness.
I know a few people who had some REAL issues with it! Be Very careful with Seroquel! I've seen people wake in the middle of the night "act out", and not remember half of what they did!

It seems you need to speak to your doctor, and be sure that S/He realizes that you are NOT getting sufficient pain relief!
I'm Not a doctor, but it seems that something on the order of a stronger pain med is indicated.

I hope you get some relief, soon! :hug:

Pete

Thank you so much for looking through this. I actually have as needed meds but basically take them only every few months in the horrid flare ups though I did 2 days ago. I have as need vicodin and darvocet. I tried tramadol and naproxen in the past. I am not big on as needed meds as in my flare up I am still in crying pain. Also the multiple pain docs I have seen are not big into narcotics. I am going to ask though next week for a better as needed just for the once an awhile. Thanks again

daniella...hope u feel better soon
 

daniella,

You and my other NT buddies, have been in my prayers. I have been down the past week with a flare of my own. You have received good feedback from these wise folks.

Listen to your body, write down what bothers you or what leads up to your break thru pain. Once you see your pain doc, go over each med. Explain how you feel and that your only focus is on getting through each day in the least amount of pain as possible.

If the doc attempts to rush you..address him and state," I need you to hear me..help me."
:hug:
Dew

weird
 

I dunno why, exactly, but I don't have much in the way of super flare ups as most of you describe. If I feel some really hateful pain coming on, I hammer it fast with fairly heavy doses of pain meds. I was told by a good doc some years ago that if you are taking percocet and you wait for the pain to get bad enough to need them, there is a lower ability of the med to stop the pain.(I compared it to migraines. If you wait til it's a 7 on the scale, you can't get it below that level, it just won't progress) If you feel it coming and hit it hard right off the bat, the meds keep the total high end pain at a lower level. This has been my experience, anyway. Anyone who has had PT for a back sprain might have heard of guarding, that is, holding the affected area still, which actually makes the pain worse? (the muscles get tighter and then spasm) Well, I guard my leg when it hurts badly, so when it's looking like a rough one, I pop a little more than usual and walk the mall until the meds kick, the pain settles and I actually feel the burn from the walking. I guess it's warmed up then, and I consciously relax my leg to let it move as naturally as possible. Yeah, it hurts really badly right afterward, but once rested for a half an hour or so, I guess the lactic acid caught in my knee leaches out(?) and I feel much better. (I assume lactic acid because I have very painful spasms just like tiny charley horses in my knee) I do this regimen every other day, usually trying to time it to when the cutest girls are at the mall. (For medical reasons. It takes my mind off the pain. That's my story, and I'm sticking to it) Well, I am off. Today there is a cancer walk at the local college and I'll fore go the mall. My grandmother who helped raise me and was like a mother to me died of cancer, as did my grandfather, and I find it a win-win-win. Good cause, raising money for the Cancer Society, good exercise for my leg, and my my my...have you seen some of the girls at the colleges??? Wow. I am also hoping that a disabled individual walking for cancer with a cane might get some media attention, perhaps I can help educate the public about our condition as well. Hmm. Should have said a win-win-win-win.

I know I may be a bit of an odd duck, but the advice I gave in regards the meds (opiates anyways) and about the exercise is sound. I've found that the more I move naturally the less it hurts later. Give it a try, lemme know how it works for you. Later all. Smoke

Hi. That is nice of you with the cancer walk. I think you should feel very proud. I have been able to do so much more since I got RSD but my pain goes in such extremes. I also have seen 4 plus pain specialists and couple that are known for rsd treatment and they are not into the meds you are stating. I have vicodin or darvocet but when my pain gets super high it is just not enough that is why I am hoping those meds that are like neurontin will get me to a better point. The treatments like blocks actually make me worse so right now an item like scs is way on hold. I do feel moving is key but finding a balance. I just don't get the delayed aspect of it as well.
On a side note Mrs D I took the Aleve liquid gel pills today and I think they are better then the other kind too. Thanks so much.
Many thoughts and I hope you have a good day

This has been my big problem since I first realized that the pain is a result of activity. It leads to fear and the fear impedes doing things. We have to keep moving and exercising or we'll go down fast.

My best bet is to avoid things that cause the most trouble and years of experience say that in physical activity that means working with my left hand over my head. It also means grasping repeatedly or strongly.

This will sound crazy but since I've gotten the RSD I've come to believe that many of our parts are conscious and re fully aware of their function and some of the activity in the brain. This is part of what is called "muscle memory" but goes well beyond this. We aren't conscious of these parts because the brain has far too much to worry about without having to screen out an "angry" stomach or a "screaming" hand. RSD seems to break down this barrier a little and I'm vaguely conscious of my hand. At least there does seem to be some little signals that I pick up on now and didn't before. It usually "tells me" when I'm overdoing it. It feels a little like a moment of pseudoparalysis or just an inkling that it's had enough. Stretching the muscles frequently seems to help.

If you put your hand straight out to your side with the palm open then twist your thumb up and to the back it ill stretch the median? nerve. This can be surprisingly intense so go very easy at first and don't do repetitions. If it helps then dip your head to the opposite side and you'll get even more stretch. It doesn't sound like much but it really gives the nerve a stretch which helps me a little.

Cold and temperature change are really hard on the hand so I have to wrap it.

I always sort of "ask" the hand to do something before I do it. If it says no then I'll use a different method to do the job. Doing little easy jobs that require the hands will give me terrible trouble the next day if I forget there's a problem. As long as I remember it seems to help a lot. The hardest things are when there is no choice. Giving first aid or something like this which has to be done and then I'm more likely to forget and more likely to be stressed. I find if I do what I can, I do a lot more than I do what I must.

A lot of overdoing it doesn't even involve the hand. I can overdo things with the hand in a cast now since my limitations are greater. I suppose the RSD is spread enough that anything I do can be too much. Diet and avoiding stress are critical.

It's so frightening since it's not getting better. I keep getting better at handling it while it mostly just gets a little worse.

You really touched a nerve with this thread since this is the basis of my predicament. It's probably similar for most of us as far as that goes though. If the dang thing would just hurt when I ate too big a piece of cake or touched something it would be easy to avoid the stressors. But it usually just waits until 24 or 48 hours later to give me hell.

Sorry for all the rambling.

bummer
 

College is out for the summer. Few pretty girls...lol...as our team didn't even get enough people, I decided to walk from town to the event, as opposed to walking the track. Mistake. Up hills, down hills, pushing the baby carriage, well...talk about pain. Damn, it hurt then, and way more later, for the balance of this week.

As far as the 'pain specialists', I find it ironic that the last thing they want to do is stop the pain. 'Here, let's stab you in the spine','here, take this pill, the side effects are horrid, and it only works 30% of the time, but that's what we're gonna do','have some physical therapy, oh, you can't take ibuprofen, too bad, no painkillers for you, suffer'. I've been to two of these people and never have I seen such a doublespeak in the name of the clinic alone. I personally believe they are fully funded by the drug companies to see what the drugs do to those who have no other choice. Find a good GP. The good docs usually do things in this order; 1) get a firm diagnosis 2) try meds 3) try other meds 4) try other meds The meds get more dangerous as they go down the list 5) make damn sure of what you have 6) try something invasive, via a pain specialist. The Pain Specialists do it in the reverse order. The first thing they want to do is stick your spine. If that fails, they want to operate. If you refuse or that fails, they want to give you the least effective med with the most risk of side effects, and only once they've run out of options do they MAYBE give you an actual painkiller. More likely, they refer you to someone else, who does the same thing they did. Yer best bet is to avoid pain specialists altogether, in my experience anyways, and find yourself an old fashioned doctor, usually, although not always, someone who has been in the profession for quite a few years. The young docs are unconcerned, it seems, with how badly they can ruin your life,(kickbacks?) whereas the older docs seem to actually care if they hurt you whilst trying to help. I had one 'doctor', and I use that word very loosely, after I had bounced an engine off my knee some years back, tell me she never prescribes opiates, and never would. "You will get addicted with just one dose of vicodin." That is her actual quote. She should be stripped of her license. As I left her office, I saw her drug rep come in. Upon being told, by me, that "Your dealer is here", she turned a color of red one usually only sees in a crayon box. :D

Smoke,
We've got to watch for those "Docs" or practitioners, who want to stay in the bidness....

I mean, if they help us, we still must return for scripts, right?
But, they're really starting to make a "bidness" out of this RSD, Fibro, etc. with blocks and all sorts of nonsense, that is never ending..

I"ve said this from the first day I was on board.
RSD is "Managed, Not Cured".

A Good doctor knows how to do that, and should act as if you're paying out of pocket!
Not trying to "clean out" an ins. companies reserves!

Pete
Asb