Unpredictability of pain

As I got up this morning I tentatively stood up and waited to see what I could do and to what degree the pain was, because yesterday was so bad that I was at the end of my tether, and lo and behold a letter for physiotherapy arrived, and I hummed and haaaed to myself about just what I could learn that I have not already tried, because when the pains start, believe me you learn pretty quickly, because I'm a coward where pain is involved, but if I have learnt anything and that is there is no magic ingredient, there is no magic movements ,there is no exercises that alleviates all the pain, for it just moves ,shift's itself as you move.

But I will go , because it has become unbearable, and I just can't take any pills for more than a day or so because my liver and kidneys react badly to all medicines.

But I'm open to anything at this stage and I know sitting in the chair too much brings it's own problem's so it's a balance of everything and I say to myself as long as I'm believed I will put up with anything if it helps, even distraction .

But it is the unpredictable way that thing's happen, like forgetting just for a moment and something happens, and times when it doesn't , and the times that it doesn't ,start's off the old battle of am I imagining these pain's, and you lash out at yourself and others, I know' I don't, but on a bad day it's hard to keep thing's in perspective , for there is nothing worse than the dismissive reaction from people especially in todays environment around Disability issues and benefits, Don't these people know that people do not arrive at where they are if there is not something seriously going on even if undiagnosed.

There is one symptom that I find hard to deal with and that is the strange sensation in palm's of the hand , it feels like' when you fall and you put your hands out to break your fall, anyone who has ever played football on a gravel pitch will know that feeling and your left with a throbbing feeling after the pain subsides.

Also thinking about what the last physiotherapist told me about tensing the muscle in my stomach helps push one of my vertebrae just enough to help me stand straighter, and although I knew that myself and would do it, but him telling me made me realise it more.

But the one thing I want to mention and ask , I've been pestering my GP to get a scan on my neck, but Now I'm wondering if I have made it worse, because since the scan the pain I've had in the area where they focused the scan (MRI) may have not been good for that muscles along my shoulders the magnetic resonance may have not been good for the muscle, a theory I grant you, but has anyone else noticed this, maybe I was wrong about my neck and maybe should have took the doctors advice earlier and not risked irritating further my pain in that area as I've doubled the pain in that area, and I mean doubled it , it burns to high heaven now and I do not need to move much to start it off, Finally I would like to add ,why isn't there some machine that can measure your pain, so that these ass----s realises that pain all the time is as debilitating as any disability, and just because you don't fill in the tick's in the boxes, it doesn't mean that you DON'T tick all the boxes.

[Hidden]

Hello Alexander

Here are some crazy suggestions for treating daily pain problems that we all suffer.

Do you feel that you are the only one to consider your points, many will agree with you. I know I do !!!

Now I feel that pain should be allowed only in triplicate when you know there is nothing to do or when it is the right time for the to suffering so we can plan for it. Like a bank account you put in pain then take it out when you feel that you have nothing on. You could actually make it a 90 day account so you could utilise most of pains problems when there is nothing on, say we are stuck in on bad weather days, in that way all the nice sunny days are free from pain and we can do all the activities we want to undertake. We could also make an instant account for bad or good days and we could actually put pain in or out, twinges could be a problem that could be added together so 5 twinges make one hour of pain.

Dizziness and falling could be allowed when we are at home with a couple of bottles of ale, we could go to bed, stay there and miss dizziness and falling down by being in bed and sleeping of the problems of being drunk falling down and being dizzy. Next morning if we are in pain we could bank that and have a nice time at the seaside, or go for a lovely mountain climb,or other sorts of activity that we now miss.

Mind we should be given interest for sunny days so pain goes away and we are left with free days because of the interest we have built up. The Chancellor could set up these accounts for the able bodied, who could by charity to Pain Patients give good days so again it would also be very practical, it would get rid of pain days for us disabled .They would possibly get a lovely warm feeling, that keeps on giving, that many disabled people may benefit from especially if the disabled patient who is incontinent.

Sometimes I feel the need for thinking what if ??. If not I would go completely and utterly mad.after thirty years of my condition and being unable to help those who carry me throughout the day, why?? because I am unable to help when home works need doing. and jobs build up

All the best

BOB

[Hidden]

Thanks Bob, but you've got a great job here on the pain board, giving out great advice and showing to others that you care, I know I took your advice to heart and I'm sure many others feel the same, keep it up best Alex

[teadrinker]

Alex,

I doubt that an MRI scan would make your pain worse - I don't know that much about them but from what I do know it seems unlikely. But I understand what you mean because when the pain gets bad we need to have a reason for it, and we'll start thinking all sorts of things. It's just human nature.

I hope you keep your physio appointment. I think you're right, sitting still isn't helpful, doing a little bit of exercise again might hurt at first but it will keep things moving. I am in a similar predicament - my pain was very quiet for months but now it has reared up out of the blue - and is in different places as well. I know I need more physio and I'm working myself up to face it. It feels a bit of a failing on my part after all this time of managing, but I suppose our bodies need some maintenance or they fall apart.

Don't get cross with yourself for not acting sooner, it's just how it is, none of us is perfect.

Keep your chin up.

[jwyllie in reply to teadrinker]

I had Acute Respiratory Distress Syndrome (ARDS). Fortunately, I was at a hospital (in Ottawa Canada) that had our nation's leading expert in ARDS. I was put into an induced coma for 6 weeks. I was kept alive by having a machine breathe for me and by the injection of massive amounts of steroids. The incredible pain was controlled by a morphine drip. The doctors in the ICU later told me that I had the worse case of ARDS they had ever seen someone survive. In fact, at one point they told my wife to spend a few moments with my lifeless body because I had only a few hours to live.

I was also a remarkable patient because 24 hours a day throughout the ordeal there would be between 40 and 100 people praying for me in the ICU lounge. On what was expected to be my last day of life, the doctors said to my wife, "I don't know what those folks in the lounge are doing (although he did) but tell them to keep doing it because we can't do anything more for him." That night there occurred a strange spiritual event that may have saved my life, but I don't really want to go into that now.

Two days later if was awakened from my coma long enough for them to take out the breathing tube, then I was put back to sleep by pain meds and other meds.

Gradually my mental facilities returned. During the coma I lost about 70 pounds. My doctor told me if I had not been over weight before the ARDS I would have died. But because I was over weight, my body had some resources to consume in my fight for life. The first resource a body looks to is muscle and then it consumes fat. When I awoke every muscle was totally atrophied - the only muscles I had left were my eye muscles and I could move the middle finger of my right hand. Getting my muscles back was a painful gruelling process.

It took 4 more months of being in the hospital for physiotherapy. The last 3 months of which took place at a hospital that did nothing but physiotherapy. As luck would have it, I got the one doctor in the hospital who refused to give any medicinal therapy (including pain control) on his zealous belief that the body would heal itself. So, I had my wife bring pain medicine to me and I went to physio 3 times a week to try to get my arms working again. After 3 months of this I left the hospital but I still couldn't lift my arms above my shoulders. The physio did nothing but cause me excruciating pain, which my doctor said would go away in time.

After 6 weeks at home my arms were no better and I got a referral to a rheumatologist. He put me on Celebrex for 2 weeks and that accomplished what a total of 4 months of physio could not do, it allowed me to have a full range of movement with much less pain. The rheumatologist explained to me that: (1) inflammation can become so bad that physio activities just cause more inflammation; and (2) when a body part is so badly inflamed (as was mine), the normal routine of working out, feeling pain for a day or two, and then seeing improvement just doesn't work.

Among the many, many things I have learned from my acute illness (including the permanent nerve and lung damage that both persist to this day 13 years later), one of the most important things I learned was that there are at least two types of pain. The first is pain that is caused by something that is giving you pain (like the pain that accompanied the rehab of my arms and shoulders) - this type of pain alerts us to the fact that we are or have been injured - sometimes the underlying cause (inflammation in my case) can be much better treated through medicinal therapy and physiotherapy, than by physiotherapy alone.

The second type of pain does not occur primarily to alert us to physical injury; rather, it involves the nerves sending false reports of pain (false in the sense that there is no underlying physical injury). This type of pain is very real, although some doctors try to avoid treating it by saying that the "lab tests" don't show any physical cause for the pain - and with that they move on to the next issue or next patient.

I have suffered from severe nerve pain three times in my life - first was nerve damage throughout my body that started after I woke up from ARDS - second was trigeminal neuralgia (in the face), the so-called suicide maker - third was damage to nerves caused during a kidney stone removal. My trigeminal neuralgia was in full attack mode and I found myself at the world-renowned Mayo Clinic (through financial assistance from my law partners and some of my clients). They prescribed methadone for pain relief and it worked immediately where no other opiate drug at any safe dosage would touch the pain. It was strange to me because I had only ever heard of Methadone in relation to Heroin addiction. Luckily, my pain specialist back at home in Ottawa was one of five doctors who had the special license to prescribe methadone for treatment outside of the hospital. At that time, methadone was rarely if ever prescribed for pain treatment (but that has changed and continues to evolve).

What I learned from my trip to the Mayo is that there is a reason why it is world-renowned - it has amazing doctors who combine practice with research. So, get the best treatment you can afford and you may get better (and much faster) results.

Sorry for the long post, but I hope it helps those of you who are in pain and facing physiotherapy and other treatment options.

[earthwitch]

I can totally understand that the MRI made your neck pains worse, but I would very much doubt that it was the magnet part of it that did it - just having to lie flat on your back with your neck in a different position to normal and not being able to move would be enough to cause that kind of problem for me. I would guess that in your case it was far more likely that it was the position of your neck during the scan that caused the problems. if thats the case, then seeing a physio to get help with very gentle neck exercises and posture (to help hold your neck in the right position) might be beneficial.

[johnsmith]

Hi Earthwitch

You don't hold you neck in the right position. You balance it there. Balance enables muscles to be fluid. Holding causes muscles to lock up. Balance involves using a multitude of muscles from the neck down to the toes.

Sorry about being finicky.

Balance is often about not doing the things that interfere with balance. Note: I have 35 years experience of Alexander Technique and Buddhist meditation and mindfulness.

[johnsmith]

Pain is unpredictable. Particularly as pain is dependent on a number of factors including muscle behaviour. Part of muscle behaviour is below the level of conscious and part of it is within our control.

The part of muscle behaviour within our control can greatly influence the amount of pain we experience. Also the pain we experience can be made worse by our mental attitude towards it.

You need to do your own research into things like chiropractic, Yoga, T'ai Chi, Alexander Technique, Buddhist meditation and Mindfulness. All things which are often outside the personal knowledge of the medical practitioner you are seeing. The medical practitioner will only do the things that can be written done in reports and trials. A trial involves many people and has statistical analysis applied to it. It is sometimes easy to tweak trial results to give a summary of the results that are wanted.

All the things I have mentioned are things you must personally experience for yourself. They also take time to to produce useful results and require much work to get the best out of them. I have been having McTimony Chiropractic treatment since the early 1990's. It does not cure my problem. It however does help keep me functioning and enables me to have far less pain than what I would experience if I did not have that treatment.

What you have said indicates that your muscles and the way they function is likely to causing some of your pain. To change that, you need to stop using your muscles in a way that causes you pain. This will require input from Alexander teachers and the use of Meditation and Mindfulness.

Not what you may want to hear. You can either try and take responsibility for some of the pain you experience or you can leave everything in the hands of the medical profession with all the problems that causes.

Living with chronic pain requires a lot of work, research and study in order to find ways of reducing it.

[Hidden]

Johnsmith, my friend, I hear everything you say, and I totally agree because I've been doing it for many years, and it's only my constant relentless actions that help me most ,because anyone that lives and suffers pain knows full well just what you do to alleviate the pain, and boy have I twisted and turned my body into odd shapes just to shift the pain sometimes just for the moment and the more you do this the more you learn about your condition and pain that your body is telling you to do something about it, and I have had help from the professionals, and I've had problems with the professionals from the beginning, and the first thing you try to do is establish an understanding with those people, but if you have other baggage , that baggage can be mountain between you and those with the filthy Lucre, for it's one thing if you can pay for private medicine and treatments, but a whole other ball game if you are the only one in your corner and your elbows are blunt.

But luckily I've had really good people working tirelessly on my side and believe me I am so thankfull to them , as I can be my own worse enemy.

I am mindful of anything that anyone tells me in regards of things to try and yes anyone knows that it is your own pain and only you feels it, and you would have to be a silly fello indeed if you solely relied on your GP, for they can only do a certain amount.

The thing about the muscle pain is you learn by trial and error and pain is a cruel teacher, and some of us have other issues that make common sense non existent most of the time.

But pain demands you listen, for example I always wondered why I would avoid putting all my weight on my leg, or my heel should I say, and I would argue with myself around issues of psychosomatic pains so would angrily over exert myself (nothing like cutting your nose to spite your face) and I'm sure I looked an ass to anyone watching.

But your body in the end reacts to pain sometimes independently of the conscious mental processes, because not only wasn't I not listening to my own body a whole lot of other people were making me feel like I was just a person under the influence of drug's and all my neurotic behaviour was a symptom of my lifestyle , not the side effect's of disbelief, or the banging on a brick wall to be listened to, or the stress of trying to have a fair hearing.

I'm not saying that I myself are not to blame for a large part of my own suffering, but there are a whole lot of people out there that conveniently ignore obvious sign's of medical problems .

No Johnsmith I am listening and learning about where my pains are coming from ,but I just hope the people that matter are listening to.

[Hidden]

My first ever treatment involved a 20 min rotation of sitting, standing, walking and lying down for 3 weeks, as guided by a chiro. This slowly increasing to more or less normal function, although if I get tired or over do things I do a 2hr rotation to recover. I have to walk 1 hr a day, or 2 half hours. If working, I take 10 mins every hour to stand or walk around.

It was very tiresome in the beginning and difficult to fit around family life. My girls were only 6, & 8 back then, not quite independent.

Nowadays, my life is hour chunks. I work 2 hrs max then do some housework, then a walk then back to work. The routine is ok now.

Pain loves routine and once you establish a routine (20 mins is extreme) then the pain subsides a bit because you are using different muscle groups throughout the day. You also feel better because you can see you have achieved things in your day.

My maximum length to drive is still 30 mins, but that's all I really need to do. If I ever needed to go further, I would increase this by 5 mins at a time to desired length of time. I do have to do at least a 10 min walk after driving.

I too wonder at the unpredictability of pain. It's not so extreme now and only a result of me not following my routine. I try to plan ahead for any changes like going on holiday, increase sitting and walking as we tend to go by car, and spend more time out and about. Then when I get back, I do my 2 hrly rotation for a few days to calm the body down.

With pain, I think it's a case of if you are prepared to work with it, you will get most of your life back. It needs your respect and dedication to keep working with it.