Severe Bodywide PAIN

[Carrigon]

How does anyone stand this pain? The more I'm doing, the more pain I'm in. I'm dying tonight. And I haven't taken any pain pills for awhile, but it's getting to where I'm going to have to cave in and do it. I'm just in screaming agony tonight.

 

[Jenny]

I'm so sorry to hear this, Carrigon.

Not sure I have any good advice, but I think it's often counterproductive to avoid painkillers when you really need them. I take tramadol regularly and although I thought that if I started them I would soon need more and more, that doesn't seem to have happened.

Hope you feel better soon.

Jenny

 

[Wonko]

I agree - for anything above mild to mild/modeate pain i would suggest painkillers if available as pain in itself is a significant energy drain - not dealing with it will both cause PEM (in some cases) and make the pain worse the more tired you are

if it's activity related pain then I would suggest your basic over the counter antiinflamitory (IBUprofen etc) as a first attempt at dealing with it - at least some of the time, for me, that can be enough on it's own - I'm not suggesting you follow my advice after that without a medical opinion but I'd then move onto low dose beta blockers and calcuim channel blockers as I've found this can help certain types of routine ME pain - probably a seriously bad idea for anyone with OI tho!!

for more severe pain I use a beta blocker, low dose tricyclic and antiseizure med (tegratol) - possibly with tramadol if required - if that doesnt sort it (reduce it to tolerable levels)then I have a tendency to get reckless lol

I use lots of other things for routine and not so routine pain management but as I say I'd start with the basics first - dont just leave it

hope you get it under control soon (or have done by now)

 

[xchocoholic]

How does anyone stand this pain? The more I'm doing, the more pain I'm in. I'm dying tonight. And I haven't taken any pain pills for awhile, but it's getting to where I'm going to have to cave in and do it. I'm just in screaming agony tonight.

sorry to hear this ... I never take pain meds unless I'm dying either but I'd take pain meds too if I were you. Loratab works for me. Fish oil could help too. FWIW though, a food dairy might help here. I get this kind of pain if I eat tomatoes or bacon. It took me a long long time to finally give these up though ... lol ... tc ... x

 

[August59]

It is a fine line, but the others are right. Unrelenting pain can cause massive changes in the body as it can alter body chemistry and hormones levels. I have had to take pain meds for extended periods due to surgery and pain caused by CFS. The one thing that I have learned is to not let the pain get to bad because then it takes more meds to calm it down. I can tell when it is going to be bad and I'll start the meds in the lowest dose possible at the longest duration. It can be every 8 hours or 4 hours, but I might do it for 2 days and even 2 weeks til it calms back down. As long as I don't take more than I need to stop the pain I'm not worried about addiction. I'm lucky enough to have not had to take anything strong in a few months, but I expect that will change someday and I'll be ready.

 

[glenp]

So scarey

I am also one afraid of these meds.

I hadn't realized that beta blockers help pain? I have turned them down until I see a more specialized cardiologist hopefully by the end of 2011!!!

What I found to help me is regular dosing of anti inflammatories for about a 6 week period - it seems to settle things down for awhile. My doctor gave me arthrotec as he says it is easier on the stomach. I do not notice anything with a dose but after a few weeks of regulae use I find the pain less intense. I have never had triger point injections - Read all precautions, its scarey I only do this when I am moreless at the end of my rope.

glen

glen

 

[Sasha]

Hi Carrigon - I'm so sorry you're in so much pain. A few months ago I started a thread asking for advice on an opiate painkiller I had been prescribed but was scared of taking and got some really interesting advice from others about the bad effects on the body of untreated pain, like August59 mentions above. I hadn't been aware of any of that stuff and it helped convince me that experiencing the pain was putting me at more of a health risk than taking painkillers. Here's the thread.

I hope you find something that works for you - I certainly wouldn't tough it out.

 

[Wonko]

glenp
hardly authorative but

http://www.suite101.com/blog/daisyelaine/beta_blockers

it's a case of knowing when to use them and when not to - as they can make certain types of pain significantly worse - which is not something to mess with if your already in severe pain - they are fairly routine in any form of pain where blood pressure may be a contributary factor - such as headache's - but can be useful (in combination) in other situations such as nerve pain - not good for muscle pain in general tho

calcium channel blockers seem to effectively raise my general pain threshold and seem to have a mild anti-inflamitory/protective effect

 

[lancelot]

Does anyone else have severe and disabling CFS/ME but with no pain? Sometimes i wonder if i have the same disease.

 

[muffin]

My husband has ME/CFS but NO PAIN

I have ME/CFS but also FM/Connective Tissue disorder, joints/Psorisis arthritis flares (new in the last year) and SEVERE full body pain.
When the huge storm came through this week the pressure dropped to the lowest they had seen. I was in insane pain all over and could not get out of it no matter what I took or how many heating pads. That low pressure front has moved and now the pain has let up a bit.

You do not have to have pain to have severe CFS. I don't know what the break out is with those with CFS/pain and CFS/no pain. Might do a survey. It would be very interesting.

 

[*GG*]

How does anyone stand this pain? The more I'm doing, the more pain I'm in. I'm dying tonight. And I haven't taken any pain pills for awhile, but it's getting to where I'm going to have to cave in and do it. I'm just in screaming agony tonight.

Painkillers when necessary. Also, you need to keep your pain in check, otherwise your body can go intoa Flare Up! I believe this is accurate, even if you do not have Fibro. If you are screaming in agony, then you should definetly take some pain killers, and also try to do less, not sure what your situation is, but pacing is part of coping with this damn disease!

GG

PS Hope you feel better soon. Like people say, you should do some other things to help with your inflammation. When I had a flare up last fall, I had Lidocaine infused into my blood stream and took up Mediation and recently started mild Yoga, I only do what I can. I am an in shape young male (40YO), so I feel a little weird about doing less than older women in the Yoga class, but I don't care, they do not need to live in my body!

 

[Sasha]

I am an in shape young male (40YO), so I feel a little weird about doing less than older women in the Yoga class, but I don't care, they do not need to live in my body!

I've been able to do less than my now 80-year-old parents for the last 25 years so I know what you mean! I read a children's version of the King Arthur legend years ago (The Sword in the Stone, I think) in which it turns out that Merlin is living backwards in time - he's getting younger as time goes on. I hope that will happen to all of us when some effective treatment finally turns up! I feel as though I've already had my extreme old age, starting at age 25!

 

[heapsreal]

Hi Wonko, calcium channel blockers for pain your right on, lyrica, neurontin, topamax all anticonvulsant meds which are used for pain and have calcium channel blocking effect. I have found they are good for non-specific pain where u sort of hurt all over. Pain does drag energy down for sure, i have been going through lower back pain problems (with lots of spasms)that have been managed with tramol but must have gotten tolerent to them, my dr has got me on a morphine tablets which last about 12 hours, enough for me to get through work without any problems. I was abit worried i was going to be zonked out but im finding because i dont have to deal with the pain , i have abit more energy then normal. My plan is to use this med for a short while then go back to tramol and hopefully i have lost my tolerance to it and maybe go between the 2 to avoid tolerance etc, its the same sort of plan i use with sleep meds which have worked quite well for me and havent had to increase doses etc. As for pain meds, hopefully in a month or 2 wont need them as i will be having a facet joint ablation for my back and will be pain free, if not i know what works for me.

I think there is alot of scare tactics out there when it comes to sleep and pain meds, but people here are using them for medical conditions, not to get high and with these meds should work closely with your doc and let him know your concerns of tolerance etc its all about improving our quality of live, chronic pain is not quality. other stuff mentioned here is good advice and its a step by step process.

cheers!!!

I agree - for anything above mild to mild/modeate pain i would suggest painkillers if available as pain in itself is a significant energy drain - not dealing with it will both cause PEM (in some cases) and make the pain worse the more tired you are

if it's activity related pain then I would suggest your basic over the counter antiinflamitory (IBUprofen etc) as a first attempt at dealing with it - at least some of the time, for me, that can be enough on it's own - I'm not suggesting you follow my advice after that without a medical opinion but I'd then move onto low dose beta blockers and calcuim channel blockers as I've found this can help certain types of routine ME pain - probably a seriously bad idea for anyone with OI tho!!

for more severe pain I use a beta blocker, low dose tricyclic and antiseizure med (tegratol) - possibly with tramadol if required - if that doesnt sort it (reduce it to tolerable levels)then I have a tendency to get reckless lol

I use lots of other things for routine and not so routine pain management but as I say I'd start with the basics first - dont just leave it

hope you get it under control soon (or have done by now)

 

[Stone]

When the huge storm came through this week the pressure dropped to the lowest they had seen. I was in insane pain all over and could not get out of it no matter what I took or how many heating pads. That low pressure front has moved and now the pain has let up a bit.

Oh yes, Muffin, I can relate to that! That horrible low pressure system last week put me in the dirt!

I've been keenly sensitive to low barometric pressure ever since I got sick 15 years ago. Over the years I've developed the habit of watching the weather and have learned to plan my 'life' around weather events and try to get necessary things done before the barometer starts falling and I start hurting a lot more.

But now it seems that when we have an extended period of low pressure and that characteristic pain starts up, NOTHING seems to get it under control no matter what I take and no matter how much heat I apply. And to make matters even more fun I now seem to get stuck in the pain flare, even when the pressure rises again after the weather event, and it's hell trying to climb out of the pain cycle. It's as if the pain has now carved a rut in the pain message pathway and it doesn't stop on it's own when the weather improves, I have to force it to finally quiet down. It's a nightmare that started a bit over a year ago and it continues to this day.

I was curious about what other conditions also cause this degree of sensitivity to barometric pressure and I got to googling. I found that this is most frequently seen in our condition. I thought it would be a real big thing in rheumatoid arthritis or psoriatic arthritis, but what I saw was that barometric hypersensitivity is by far more common in ME/CFS especially with fibromyalgia. I was surprised, but of course 'googling' is a most unscientific way to arrive at conclusions. Still, I wonder if anyone will ever study this as it could hold a clue as to what is actually causing the widespread pain characteristic of our condition. As I understand it, no one actually knows for sure what physiological structures are doing what which results in the pain. It seems to me that pain that can get this 'big' should have some physical explanation.

All the best to one and all,
Stone

 

[*GG*]

I've been able to do less than my now 80-year-old parents for the last 25 years so I know what you mean! I read a children's version of the King Arthur legend years ago (The Sword in the Stone, I think) in which it turns out that Merlin is living backwards in time - he's getting younger as time goes on. I hope that will happen to all of us when some effective treatment finally turns up! I feel as though I've already had my extreme old age, starting at age 25!

Yes, that would be nice! Although I don't need go back to school, so it can stop in my mid 20s, that would be fine for me!

 

[Carrigon]

I'm still in alot of pain. And my PEM is severe. I went to the store yesterday, and OMG. I was in so much pain, I was almost crying yesterday. And today, I can't move. And the fatigue is unreal. The more I do, the worse I get. The more pain I end up in. Just from normal, everyday things. It's so awful.

The problem with me and pain killers is that they add to the fatigue. So I can't take them much because then I can't do anything at all and they fog out my head more. I usually need to be alert and be able to do even the small things I have to do. That's the problem. If I didn't need to be alert or do stuff, I'd take something for the pain more often. So I end up suffering a thousand times worse. And the stuff that doesn't mess with you, like NSAIDS, make my acid reflux a thousand times worse. So I'm damned either way.

 

[heapsreal]

maybe try kava extract with your more traditional pain meds. kava is said to enhance the effects of pain killers. Kava doesnt make u sleepy but a calm feeling. My suggestion is to try this with asprin and panadeine, not sure where u come from but in australia panadeine is bought without a script, it has paracetamol/tylenol with codeine 10mg with tha kava, kava will enhance there effects as well as having direct pain relieving effects.

if u tolerate it, valium can help with pain and relax muscles, even though it might make you sleepy, maybe u need a couple of days just being sleepy at home to recover. I would also look into a big dose of injectable b12 and if u cant get that get the b12 tablets that dissolve under your tongue and take a few doses throughout the day, a bigger dose then normal can help get u out of a 'crash'.

cheers!!!

 

[Wonko]

I had to make my home safer for me stumbling about, organise furniture so that it doesnt get in the way but is there for me to catch myself on (and so it doesnt damage me seriously if I dont) - yes some painkillers increase foginess and fatigue - at times i consider that a blessing as it both make me rest more and affects my memory so that whilst I may be in essentially unremitting pain I am not most of the time awre of it - I am aware I am in pain now but thats a much easier thing to deal with than knowing your in constant pain and have been forever - it's a simple trick but it works for non severe pain - and even severely foggy, barely able to see, stand or think, constantly bumping into things, I can still manage the absolutel basics so I dont starve or die of thirst (even if it takes several hours for the impusle, the planing and the act to succesfully come together) - tho not much else - but not much else is important in that state - eg you could base an entire comedy series around my attempts to spread bread or make a drink more complicated than water whilst in that state

severe pain is your enemy - not because it's extremely unpleasant but because it saps energy at a phenominal and completely unsustainable rate, it stops you getting rest, it stresses your already stressed system more etc etc. - once it reaches a certain point you will not get better until you deal with the pain and allow your body a chance to recupperate

I hope you manage to figure out something that works so that your no longer in such pain