Chronic Pain - How The Hell Do People Cope?

[StefanVXR8]

So about two and a half years ago I'd got in to the mental state of mind for loosing weight, I was approaching 17st and I'm only 5'7".

Started going to the gymn and although I didn't 'like' it I stuck at it and lost two and a half stone in 7 months.

Came home one day a little more achy in the legs and arms as usual and the pain has stuck with me and got progressively worse since.

Currently on a pain scale of 1-10 (10 for me being kidney stone pain!) I'm about an 8 almost 24/7.

I've been for various tests for muscle related issues, nuclear bone scan, MRI of the lower half and nothing is showing as the cause.

I was on statins for a couple of years leading up to the start and that was thought to be the cause, so I stopped those two years ago, no change.

My GP then had my Vitamin D level checked, that was very low so he put me on a high dose, level has been normal for about 6 months now, no change.

I've been scanned for cancer in some of the above tests, nothing showing.

So presently I'm simply on medication to try and relieve the pain and that isn't working. I've tried Tramadol, Diclofenac, Pregaballin, Gabapentin, extended release Morphine Sulphate and Oramorph.

I'm currently on 200mg twice a day of Palexia (Tapentadol) which is supposed to be a new wonder opiate drug with less side effects (which in fairness Vs Morphine Sulphate extended release it's miles better), 10mg Sevredol (morphine Sulphate) every 4 hours, 1000mg of paracetamol every 4 hours, Nortryptiline as a muscle relaxant, 400mg Ibuprofen 3 times daily and occasionally Metaclopramide as and when required to relieve sickness.

At best I get a couple of hours in the evening of reduced pain but the rest of the time is pure hell.

I can't do much like I used to, the more I do the more it hurts and I'm becoming more and more withdrawn.

Work is a real struggle but as I'm a freelancer if I don't work I don't get paid so apart from days when it is really, really bad I have to do it, fortunately it's IT so not strenuous physically.

Over the last two months it's got progressively worse and all of the pain relief I'm on at the moment doesn't do much.

I'm currently awaiting some tests for metal poisoning as I had dental implants about 3 years ago and there's a suggestion it may be that.

Anyone else here in a similar situation and if so how the hell do you cope? I feel I'm at the end of my tether with it now and I'm physically and mentally both tired and drained with my ability to cope.

It's starting to have a bigger impact on the family as I need extended periods of rest (probably due to the medication), and my Wife has mentioned this week how quiet and un-interactive I've become. She knows I'm not in a good state of mind presently and of course it's upsetting for her too.

Unfortunately I just can't see any light at the end of the tunnel!

Stef

Aged 43 (feeling 93)

[SMGB]

I was amazed to find out how many people suffer from chronic back pain when I had my sciatica flare ups 2 years ago. I was easily diagnosed and the treatment worked but it gave me a glimpse over the edge and it was scary. I can't imagine coping with that permanently but I found out that a lot of people do and somehow find the courage to do it. Very luckily in my case the max dose codeine kept me mobile if not totaly pain free and rather spaced out. going cold turkey afterwards was unpleasent, but a nice problem to have. The OH was very supportive although I didnt get much sympathy when I got over confident about my recovery and pinched the nerve again. Luckily just doing the same treatment again recovered it and I'm still OK.
There were a lot of crystal, meditation and snake oil salesmen out there as well. If they help some people and make a living they are welcome to each other.

[Davel]

It must be awful for you and I haven't a clue sorry.

Had sciatica once for a few days and none since.

I can't imagine how people live with things like this - just hope that you get it sorted quickly.

[StefanVXR8]

Thanks guys. It's particularly bad today and I have an overwhelming feeling of sickness today too, but I'm almost 5 hours in to my working day so far, but struggling slightly to concentrate!

Stef

[LBird]

In all the tests you have had, did you have a thyroid function test? I ask because I was suffering excruciatingly painful joints a while ago, no relief from pain killers (although I didn't go beyond OTC stuff as it didn't occur to me to go the GP about it ) and a random blood test uncovered an under-active thyroid. Once the thyroxine dose was properly titrated the pain vanished.

Alternatively, have you had tests for rheumatoid arthritis?

[dave_s13]

Sounds horrible, terrible when you are used to being able to exercise and then suddenly can't.

Where is the pain exactly? Is it back related?

Have you looked into finding a good osteopath/chiropractor?

Could you go back to your GP and ask to be referred to a different MSK specialist for a 2nd opinion?

[Broomsticklady]

I'm on some pretty hefty pain stuff for secondary breast cancer giving me horrendous back hip and leg pain so you have my sympathy. The only medic I've found who really understood a) the pain and b) the problems with drugs is the palliative care man at the hospice, which isn't really open to you, but I spose is poointing at you needing a proper pain specialist rathert than whatever it is you're seeing now - I'd insist on a referral.

To give you an idea of what my Pain Man did for me - effective doeses of the oxycodone SR and breakthrough plus nerve pain combinations meant I was awake about 5 hours, split into 2 * 2,5 hours a day. And I was brain dead. He transitioned my to hydro morphine at same pain relieving level, and it was as if a switch turned on - I had me back - plus no pain!! Magic!! Luckily since then I've benefitted from radiotherapy to my hip which has meant I can reduce pain relief for now which helps a lot.

One thing - I can't remember from your list of pain killers - I only skimmed - do you take max humble paracetamol? I'm told to do that as apparently it eases the way for the morphine to do its magic. The other thing I found helped was changing from immediate release ibuprofen to slow release prescription only - the dosage for that can be higher too so you can take more of it!!

Hope someone can do same for you.

Nina

[StefanVXR8]

LBird said:

In all the tests you have had, did you have a thyroid function test? I ask because I was suffering excruciatingly painful joints a while ago, no relief from pain killers (although I didn't go beyond OTC stuff as it didn't occur to me to go the GP about it ) and a random blood test uncovered an under-active thyroid. Once the thyroxine dose was properly titrated the pain vanished.

Alternatively, have you had tests for rheumatoid arthritis?

Yes, had tests for both several times now and all OK. My CK (creatine kinase) levels were elevated for a while but not to any levels considered an issue.

dave_s13 said:

Sounds horrible, terrible when you are used to being able to exercise and then suddenly can't.

Where is the pain exactly? Is it back related?

Have you looked into finding a good osteopath/chiropractor?

Could you go back to your GP and ask to be referred to a different MSK specialist for a 2nd opinion?

The pain is predominantly in the legs and also in the arms, although the arm pain is rarer but can be bought on after holding and tapping away on an iPad for 10 minutes or so.

The pain in the legs varies, one day it will be severe in the thigh area, another day around the knee, sometimes it feels in the muscle, other times deep in the bone. Not particularly consistent in any one area that you could outright say it's there all the time, the pain is, the location isn't.

The actually pain itself is a very deep ache as opposed to sharp pain say if you knock your shin or something.

So far I've been seen by the rheumatology and neurology departments at Southampton General, I've had muscle conductivity tests with electrodes and that was all ok.

Had the bone scan to rule out bone cancer and tests for just about all known conditions and canine related diseases!

Until just before Christmas I was on about 200mg of morphine a day split across slow release tablets and liquid morphine (Oramorph), and whilst it was helping a little with the pain I was like a character from the walking dead, not good when you are up at 05:30 and in the car driving up the M3 by 06:00, at times it was getting dangerous to drive so I had to change my medication around just to be safe.

I got switched to Palexia (Tapentadol) to replace the slow release morphine and whilst its not quite as effective for pain relief (although I'm only on a total of 400mg a day and the max dose is 500mg) the side effects are amazingly better, within ten minutes of getting up I'm relatively wide awake and a hundred times more alert in the car.

I don't sleep to well either, I wake about 4-5 times a night, sometimes with excruciating pain in the legs that quite easily turn me to start Tourette's syndrome (light hearted joke, no offence to real sufferers).

I have been referred to a pain consultant who got me switched to Palexia, apparently it's relatively unused and very expensive and I'm due back to see him again next month.

I've got an appointment with my GP on Friday and I'll talk to him about increasing my dose of Palexia to the max and something better than the 10mg tablet of morphine every 4 hours, it's bloody hard trying to balance pain relief and being a zombie. Like I mentioned earlier he's also looking in to tests regarding the dental implants I have, my sister did some research and found a link between the metal implants and the symptoms I have.

I'm going to be pissed off if that is the issue, it was a huge sum of money to have them done and coupled with the fact that after years of low esteem I finally got myself a healthy white smile and was loosing weight it feels like the biggest kick in the balls ever!

It's like I'm being punished for something, and that's what gets me, those that know me know I'm pretty down to earth, doing anything for anyone (within reason!), christ, a few months ago I was keeping regular checks on my neighbour, poor guy was terminal with cancer and I found him one afternoon collapsed by the side of his bed and hours from passing away, he was in a bad way and had a toilet related accident, I got him an ambulance and then spent the next two days cleaning his bathroom/bedroom and laundering all his bedding just so any relatives wouldn't find it that way and of course to preserve his dignity. Sadly he did pass away that night I found him and of course that's kind of hit me too.

So all in all I'm feeling pretty low right now what with the pain, the constant waking up etc, the worries about what's around the corner and keeping the house and family together.

Four or so years ago I was relatively care free and happy, today I feel totally fked.

Stef

[dave_s13]

Sounds very complicated, seems unimaginable that they essentially can't find anything wrong as such.

All the best with it

[StefanVXR8]

dave_s13 said:

Sounds very complicated, seems unimaginable that they essentially can't find anything wrong as such.

All the best with it

Cheers Dave, hopefully something will come up!

Broomsticklady said:

I'm on some pretty hefty pain stuff for secondary breast cancer giving me horrendous back hip and leg pain so you have my sympathy. The only medic I've found who really understood a) the pain and b) the problems with drugs is the palliative care man at the hospice, which isn't really open to you, but I spose is poointing at you needing a proper pain specialist rathert than whatever it is you're seeing now - I'd insist on a referral.

To give you an idea of what my Pain Man did for me - effective doeses of the oxycodone SR and breakthrough plus nerve pain combinations meant I was awake about 5 hours, split into 2 * 2,5 hours a day. And I was brain dead. He transitioned my to hydro morphine at same pain relieving level, and it was as if a switch turned on - I had me back - plus no pain!! Magic!! Luckily since then I've benefitted from radiotherapy to my hip which has meant I can reduce pain relief for now which helps a lot.

One thing - I can't remember from your list of pain killers - I only skimmed - do you take max humble paracetamol? I'm told to do that as apparently it eases the way for the morphine to do its magic. The other thing I found helped was changing from immediate release ibuprofen to slow release prescription only - the dosage for that can be higher too so you can take more of it!!

Hope someone can do same for you.

Nina

Thanks for the reply Nina and truly sorry to hear of your tail of woes, I hope your outlook is good and wish you well.

Funnily somebody at work mentioned about paracetamol being useful for the uptake of morphine so yes I do take 1000mg every four hours about four times daily.

I'm going to talk to my GP about the ibuprofen because I had slightly better results with 50mg of diclofenac, especially in the evenings.

The breakthrough pain is the issue for me because its very intense between 07:00 and 19:00 generally, outside these hours the aching is there but not as bad, apart from that occasional wake up call early in the morning when I feel like someone is sawing my leg off with a blunt tenon saw!!

What's really strange is that in December 2010 it went away completely, we spent Christmas and New Year in New York, plenty of walking and not a hint of pain, got part way through January and started thinking about getting back to the gym and within a week or so it was like somebody switched it back on and it's got progressively worse since then.

I'll mention some of the meds you've mentioned to my GP on Friday, thanks for that, and best of luck!

Stef

[steveT350C]

Hi Stef,

Sorry to hear your story. I can't imagine what living with long term pain could be like.

I come from a very medical family, and have a science degree, and am very sceptical of 'alternative medicine'

However, I do not consider acupuncture to be alternative. Acupuncture is known to be very good at pain management. I used to suffer from psoriasis, so badly once that I could not move my hands in relation to my arms because the skin on my wrists would crack and bleed. I tried everything 'western medicine' could offer. The only thing that came close was very strong oral steroids, which have nasty side effects.

I was told about acupuncture during a flare up. Four half our sessions and I was clear. A couple of years later I noticed the usual scales appearing again, two half hour sessions cleared it up. I have never had psoriasis since.

It is worth a go, but make sure you go to a fully qualified practitioner, preferably qualified in china, and not just a GP who has done a 12 week course.

Apart from clearing up my psoriasis, having acupuncture actually makes you feel incredible, you float rather than walk out of the clinic/office. It was this feeling that convinced me that the Chinese know stuff that the west doesn't.

Anyway, that's my story and suggestion.

Best of luck.

Stephen

[RaeB]

If it is the metal poisoning, message me. I have a friend who has gone through exactly that and I may be able to pass details on.

Rachel

[GrumpyTwig]

Random one but have you ever had a blood test for Thyroid function? Supposedly can be the cause of symptoms similar to those described.

[StefanVXR8]

Thanks for the replies guys, means a lot, had a particularly bad night last night for pain and lack of sleep, think I grabbed maybe two hours at most! Started off by getting a call from one of our vendor account managers late'ish last night about critical vulnerablities just discovered in some Anti-Virus software we use, so my mind suddenly switched to work mode and stayed there!! Therefore busy day, not in the right frame of mind.............

Stephen,

I think acupuncture is an option open to me via the pain management clinic so I'll enquire about that.

Rachel,

Will let you know the outcome, thanks.

Grumpytwig,

Yeah, been tested for that a couple of times but it all came back normal.

X 20!

Stef

[dreamer75]

I saw a pain management psychologist yesterday - she works together with the consultant and a physio, so they tackle the whole thing; medication, exercises and mental approach.

It was only the first appt, but it seems to be a lot of CBT type stuff; looking at your values (and probably changing them), and trying to help with the associated stuff (like you say, attitude at home, which can break relationships etc.). I'm not sure yet whether it's going to help, but there's another aspect to it - I started reading a book by Nevill Shone (I think it was called Coping with Pain) and he talks about how pain can be relative; i.e. associated with your state of mind. If you're sad, focused on it, bored etc., the pain can be worse than if you're doing something enjoyable and you're happy. And I think she will also look at that element.

The way she put it, she moves the focus so instead of your pain being up in your face (like reading a book held up to your face), it moves away (like putting the book down on your lap).

Not sure where you are in the country (she is South East based) but that in addition to the drugs and exploring alternative therapies (and of course diagnosis!) may help?

Have you had your back looked at too? My issue is lumbar related (2 ops so far) and I get leg pain similar to what you're describing - like someone's squeezing the bones in a vice, or stabbing, or sore points in my muscle from bum to toes.

[Speedracer329]

Hi Stef, really sorry to hear you are having such a hard time of it. Do you suffer from restless legs in the night?
I can relate to your story, although I was coming from a much stronger position physically. Just 8 years ago at 47 I was good enough & fit enough to play football in a side made up of 7 ex-pro's & 2 ex England players, one of whom was Chris Waddle. I would suffer for days after a game but at first put it down to my age, but the pain throughout the whole of my body was so bad it was affecting my job. Over the first 4 years I was sent to one specialist after another, had blood tests, x-rays, had a radiation solution put in my body & placed on a rotating table, even had an op for a double hernia, which I didn't need, yet another wrong diagnosis. About 4 years ago I was given a diagnosis of fibromyalgia. Now I know lots of people think this is a false illness, but I wish they could walk in my shoes for a while, they would change their minds. It is compounded by the fact I also have frequent bouts of sciatica, brought on by how I walk due to the pain I am in, carpel tunnel in both wrists, trocanteric bursitis, & the inevitable depression from having to deal with these problems.
Although the side effects are not good, I am on 200mg Tramadol 4 times a day, plus Ibuprofen, Trazadone, Amytriptyline & Omeprezal. Like you I also don't sleep, sometimes for consecutive nights, & it is the constant pain from all this that is the most dibilitating. Somewhat bizarrely this has brought on excema & psoriasis too.

Can you ever describe your pain as like having hundreds of electric shocks continually all over your body? Or maybe some area's of your body are numb, or do you have pins & needles anywhere?
The point that dreamer75 makes about the book Coping with Pain is a good one, but if I read your post correctly the pain is so unrelenting that it is impossible to ignore?

[StefanVXR8]

dreamer75 said:

I saw a pain management psychologist yesterday - she works together with the consultant and a physio, so they tackle the whole thing; medication, exercises and mental approach.

It was only the first appt, but it seems to be a lot of CBT type stuff; looking at your values (and probably changing them), and trying to help with the associated stuff (like you say, attitude at home, which can break relationships etc.). I'm not sure yet whether it's going to help, but there's another aspect to it - I started reading a book by Nevill Shone (I think it was called Coping with Pain) and he talks about how pain can be relative; i.e. associated with your state of mind. If you're sad, focused on it, bored etc., the pain can be worse than if you're doing something enjoyable and you're happy. And I think she will also look at that element.

The way she put it, she moves the focus so instead of your pain being up in your face (like reading a book held up to your face), it moves away (like putting the book down on your lap).

Not sure where you are in the country (she is South East based) but that in addition to the drugs and exploring alternative therapies (and of course diagnosis!) may help?

Have you had your back looked at too? My issue is lumbar related (2 ops so far) and I get leg pain similar to what you're describing - like someone's squeezing the bones in a vice, or stabbing, or sore points in my muscle from bum to toes.

My pain is pretty much there all the time whether I think about it or not, some days are a little better than others but nothing I do really makes a difference. A hot bath helps a little and by 7pm it starts to ease for the first time in the day. I finish work at 3pm, have a 40 minute stress free drive home mainly on cruise control and then generally rest up for the night, when I first get in bed its relatively pain free but of course at that point I'm about 4 hours in from my medication which I take at 6am/6pm, it thens starts to wear off in the early hours and the pain starts to return.

So I get maybe 7 hours of reduced pain in any 24 hour period.

Today for example I was really busy, but I was aware of fairly intense pain all day even though I wasn't physically thinking about it. I wouldn't say I'm particularly stressed in general and certainly no particular activities/work/etc makes it better or worse..

My lower back and pelvic area was MRI scanned recently in case it was a trapped nerve or something but that came back pretty positive, in fact the pain consultant said he'd be happy with a scan like that, my lower lumber is in a condition expected pre age 21, only the slightest protrusion between the vertebra in one place, testament to the fact I don't do anything strenuous!!

However, I do occasionally get lower back pain although normally self inflicted if I've been out leaning under the bonnet for a while sort of thing, but that normally clears up.

Mind you I did have a panic when I had my nuclear bone scan as they left the monitor on and I saw my skeleton develop on the screen and there were a few white areas dotted around indicating new growth normally associated with damage, plus they kept asking me questions like had I fallen recently? No. Was I sure? But that scan result came back clear for the bone.

I do have Gastro Oesophageal Reflux Disease which I take Omeprazole for daily so my throat area was pretty white on the scan but they didn't mention it.

I did have a chat with one of the specialists at the hospital about whether anything specific bought it on or relieved it and like I said apart from maybe a hot bath (which incidentally tends to make me feel quite sick) there's no rhyme no reason too it, I can take 4 days off and rest up and it doesn't help, I can keep active, and that doesn't help!

Speedracer329 said:

Hi Stef, really sorry to hear you are having such a hard time of it. Do you suffer from restless legs in the night?
I can relate to your story, although I was coming from a much stronger position physically. Just 8 years ago at 47 I was good enough & fit enough to play football in a side made up of 7 ex-pro's & 2 ex England players, one of whom was Chris Waddle. I would suffer for days after a game but at first put it down to my age, but the pain throughout the whole of my body was so bad it was affecting my job. Over the first 4 years I was sent to one specialist after another, had blood tests, x-rays, had a radiation solution put in my body & placed on a rotating table, even had an op for a double hernia, which I didn't need, yet another wrong diagnosis. About 4 years ago I was given a diagnosis of fibromyalgia. Now I know lots of people think this is a false illness, but I wish they could walk in my shoes for a while, they would change their minds. It is compounded by the fact I also have frequent bouts of sciatica, brought on by how I walk due to the pain I am in, carpel tunnel in both wrists, trocanteric bursitis, & the inevitable depression from having to deal with these problems.
Although the side effects are not good, I am on 200mg Tramadol 4 times a day, plus Ibuprofen, Trazadone, Amytriptyline & Omeprezal. Like you I also don't sleep, sometimes for consecutive nights, & it is the constant pain from all this that is the most dibilitating. Somewhat bizarrely this has brought on excema & psoriasis too.

Can you ever describe your pain as like having hundreds of electric shocks continually all over your body? Or maybe some area's of your body are numb, or do you have pins & needles anywhere?
The point that dreamer75 makes about the book Coping with Pain is a good one, but if I read your post correctly the pain is so unrelenting that it is impossible to ignore?

You have my sympathies as a fellow sufferer, I too sometimes wish I could just transfer exactly how I feel to others, just for an hour so they can see, I wouldn't wish it on anyone full time.

My GP mentioned Fibromyalgia and when I saw someone at the hospital they performed the sensitive pressure point test associated and not a single point was painful.

My pain is just generally a real intense deep ache, can't say I get electric shocks (except in my brain when the morphine's running out and the withdrawal kicks in, and that's not pleasant!)

Ocasionally a knee might get red and hot to touch, but never swollen. But the rest of the time it's 90% in the legs and moves around from top to bottom.

I can't say I have restless legs though, when I get awoken with a sudden bout of excruciating pain I have to suddenly move them to alleviate the pain.

You're right about the relenting pain, as mentioned above for about 7 hours I can kind of ignore it as the meds quieten it down, but today even though I was really busy it was there, I didn't have to think about once it was as present as the office noise around me.

One thing I forgot to mention is that since all this started I also developed tinnitus, that's been looked at too and I have highly sensitive hearing which was deemed good, but the constant ringing is there, I can hear it above everything else but fortunately it doesn't bother me, it's like the multitude of clocks in the house, I don't hear them tick or chime unless I think of it.

The ENT specialist thinks it may be due to medication but it's never varied as I've chopped and changed.

I was on Tramadol for a while and it helped for a bit, but when the doctor changed me to Gabapentin he didn't say ween off the Tramadol slowly, I went cold turkey, thought I was going to die, everything in my body would stop for a couple of seconds, very bizarre couple of days, told my Wife a couple of times she might have to call me an ambulance!

The Palexia I'm on now is brilliant for no side effects, if only it gave better pain relief!!

Stef

[dreamer75]

Yes - she said they can't make the pain go away, but they can help change the focus (like you say when you're busy you are aware of the pain but it isn't at the forefront, iyswim)...

I had the same with Tramadol too - why don't doctors warn you !!!!!

[StefanVXR8]

dreamer75 said:

Yes - she said they can't make the pain go away, but they can help change the focus (like you say when you're busy you are aware of the pain but it isn't at the forefront, iyswim)...

I had the same with Tramadol too - why don't doctors warn you !!!!!

Crazy isn't it.

I look into what you mentioned, thanks for the replies.

Stef

[Prof Prolapse]

Can't help you with the specifics as I'm not a medic but a couple of things that I would say, the first is that the link between metal poisoning and fillings has been investigated a lot over the years and been found to be a load of bks.

The other thing that you may have already tried is topical menthol cream (like deep heat). I audited a study some years ago that used it in patients with bone metastases (that would be an 11 on your 1-10 scale) and they derived some benefit.

Brief details here:
http://www.livestrong.com/article/247048-effects-o...

dave_s13 said:

Have you looked into finding a good osteopath/chiropractor?

Don't do this. It's pissing your money away and they may end up doing more harm than good. Stick with qualified medical practitioners.