Daft question?

[Calceolaria]

One of the definitions of chronic pain hinges on the gateway theory, that pain signals continue to fire into the spine/brain and the brain continues to process the signal as pain even when there is no longer a pain stimulus. My daft question then is, why does my pain improve with rest? Or why have "good days" if the pain signals are firing away supposedly regardless?

[trudyl65]

I understand wholly wHat you are trying to say x

[earthwitch]

I think there is a real difference between "chronic pain" where pain signals misfire, and pain that has a definite cause and where the cause can be relieved with, for example, rest. I would say that I have chronic pain in that I have pain every day, and most of every day, but I don't believe it has anything to do with pain signals misfiring. My pain is a direct result of untreated inflammatory arthritis. If I do get treatment (eg short courses of steroids) my pain disappears. So its actually not a misfiring of signals, its a very accurate firing of signals in response to a real disorder, that can be stopped if the cause is treated..

If your pain relieves with rest, then I would suggest that its something a bit more obvious than misfiring pain signals, and could be to do with some kind of mechanical damage or injury that just doesn't hurt if the area isn't being used or stressed.

I think the NHS is tending to lump everyone with ongoing pain into the "chronic pain - misfiring of signals" box, rather than trying to address the cause of the pain. In some cases it really is that pain signal problem - eg where the injury was some time ago, and has been fixed, but pain persists, or in something like fibromyalgia where there isn't any one specific point of injury, but for a lot of folk, if we got the problem dealt with properly, then a lot, if not all, of the pain would go.

[thebuzzard in reply to earthwitch]

hi earthwitch,

i too have inflammatory arthritis, but have never been offered a course of steroids. how often can you have them and do i just suggest it to my gp, as nothing seems to be working at the moment and im having a horrible flareup. so im feeling desperate!

[earthwitch in reply to thebuzzard]

Steroids arent the first line treatment for inflammatory arthritis, so if you aren't seeing a rheumatologist, then you need to be referred back to one. If you are seeing one, then they need to know that your pain isn't being controlled and try and deal with it in other ways first. I'm only on steroids because I have used up all the first line meds for ankylosing spondylitis, but am not eligible for anti-tnfs, so steroids are my only option right now. My GP will allow me to have up to two weeks at up to 15 mg a day up to four times a year. Or replace a two week course of oral steroids with an IM injection. But, even that isn't safe long term. Steroids really are best avoided unless there is absolutely nothing else, or its the only med for the job (eg in certain diseases). So my recommendation would be to first make sure you are under the care of a rheumatologist and make sure they know how bad things are for you.

[Calceolaria]

I'm coming to that conclusion too, Earthwitch. I think the exercises have exacerbated my pain even though I felt stronger and more vital in the first few months. Pain Management is rather evangelical in approach so I don't expect a great deal of lateral thinking at my next review. Meanwhile, my gp has had bloods taken for inflammatory causes. I do have stacks of structural degenerative issues but surgery, which is the next step for that, I have been desperately trying to avoid.

[earthwitch in reply to Calceolaria]

theres definitely a difference between pain management programmes and pain clinics too - pain clinics tend to juggle your meds and try different treatments for pain control, whereas pain management is all about understanding what is going on and psychological methods. For me, psych methods can knock pain levels down maybe one point on the scale, but I still need the medical approach to really deal with pain.

[Kat3]

Hi Calceolaria (great name!)

I think the answer is somewhere inbetween. I have seen many pain psychologists and pain physios as well as done a pain management course and as I understand it, there is probably a small, non-dangerous mechanical cause, such as a little bit of inflammation or scar tissue, that your body, after having been sent pain signals for so long, interprets as a big, dangerous painful intrusion. So someone else with the same amount of inflammation or scar tissue, wouldn't feel anything, but to someone who has become over-sensitised, it feels like pain.

I know with me, I have had too many operations and procedures in my lower back and now the area is oversensitive – for a few months, the skin was even sensitive to touch.

I also get better with rest. So usually I feel better in the morning, before I've done anything and I feel worse when I do too much.

As to what helps, I'd recommend a good physio who understands chronic pain (or a pain physio) and perhaps a craniosacral therapist who can slow down an overactive nervous system. I've also found a specialist Iyengar yoga class for people with back problems, and they do exercises to 'make more space' in the back.

I agree that those pain management courses can be very evangelical! I actually wasn't any better after the course I did, but some of the tools I learned, such as pacing, have been really helpful.

As to the NHS not doing much – I've mostly seen private doctors and my operations were done privately and I have to say, I wish I had gone to the NHS instead of privately as the first operation I had (which, looking back, I didn't really need) made me 100 times worse. And the private sector also likes to lump everyone with chronic pain into a box just as much, and 'refer' you on to someone else if they don't think you are responding quickly enough to their treatment. And they are a bit too quick to 'do something' that could potentially make it worse.

If I were you, I'd get a second or third opinion about your op and ask about success rates and possibility of it making it better, or God forbid, worse. Also, make sure you research whatever surgeon you decide on (if you decide to go that route) to make sure he/she is the best one available. And if not, then ask for the one you want.

Good luck!

[Calceolaria in reply to Kat3]

Thanks Kat. Glad you like the name. This board would not accept any of the names I put forward so I finally thought I'd go OTT with Calceolaria. I feel a bit embarrassed about it now as some responders must get fed up with it. My actual name is Mary ! Thanks for advice. I have already chosen my neurosurgeon who has deferred my first op twice now, so I could give Pain Management a fair crack of the whip. Good luck to you too - in fact to all who suffer daily.

[pinknosedcat]

Hi Mary, going back to your original post...I think the most important thing to remember about the pain gate theory, is thaat it is just that...a theory. it's simply the best theory they have come up with so far, given the technology they have at hand. As a working theory it does make some sense but bodies are such complex organisms I think it will be a long time before they work out why we have 'good' days and 'bad' days. My initial thiinking is that hormones play a great part in women's perception of pain, men too i would htink but as they don't have periods to deal with i think they're systems are more stable. Have you ever kept a pain diary? It might help you find your own triggers. If you note down your pain levels every couple of hours for as long as think useful and include your physical activity on that day, and what you've eaten, where you are in your cycle etc. you never know it may show something up. Stress is also a big factor in the perception of pain...so if you consider in your diary your diet, activity levels, relaxation techniques, where you are in your monthly cycle and possibly your stress levels. That's 5 main factors that influence the perception of pain, dunno if it will help...what do ou think? aside from all that...i really do understand how bewildering and frustrating it can be at times when your pain levels shoot up for no seemingly good reason.must go nmow cas my dog is demanding cuddles. good luck with your search. H x

[Calceolaria in reply to pinknosedcat]

Thanks pinknosedcat.

[johnsmith]

The problem is the "gateway theory" is a theory made up by the psychological profession and may have no bearing as to what is happening in reality. The body is a physical system obeying the laws of physics and engineering. Muscles and muscle behaviour can have a large bearing on how much pain you experience. The gateway theory totally ignores the input from a system that obeys the laws of physics and engineering.

You need to see someone who help you explore the input that the way you use your muscles have on the pain you experience. We use muscles and muscles function in particular ways as a habit. This habit may be what is causing pain and may need to be changed to a more improved muscle usage.

Alexander Teachers are useful people to make contact with in this regard.

Hope this helps

[Calceolaria]

Thanks John. I have read your posts re Alexander and McTimoney techniques with interest and I agree with what you say about muscle involvement in pain. I have a lot of degenerative bony problems and chicken and egg spring to mind!

[teadrinker]

I can go for long periods when I don't get much pain at all - it's there but it's in the background and not interfering, or the botox has turned down the intensity of it. Then something will set it off quite badly, and it's usually a very mechanical thing like misusing the muscles by carrying something or sitting for too long that's done it. A physio told me that I would always be predisposed to getting pain at times because of my anatomy, and so for me, the idea that my body is some sort of engineered structure (that was put together a bit wrong) works.

I've tried all sorts of things like physio & osteopathy which have made it worse. I think the thing that helped was finding a physio who used several strategies to deal with the problem, and a fitness instructor who also understands the mechanics of the body and posture.

We are all different and don't necessarily fit into little boxes as defined by health services. Sometimes I've felt despair at having to go through some prescribed treatment which hasn't made the slightest difference, or has made it a bit worse, but it seems that there are so many things that can be tried and often a combination of things to manage the pain.

Of course, the damn pain changes and you have to try out something else. It is a tricky game. (Sorry if going on, bad night, no sleep!)

[Calceolaria]

Thanks teadrinker. Trouble is, I have researched and consulted and tried therapies and I feel I am missing something simple yet effective or that my body will gradually deal with it. Probably part of the grieving process!

[Hidden]

Hi Mary and Pinknosedcat, I have self observed that rebalancing hormones makes a big difference to my pain. If Im stressed I can feel severe pain moving up my body. This takes days to settle. For mood generally and energy I take Pregnelolone once a day, the kind that bypasses the liver.

This is the hormone that is the base from which all others are made so it supplies the body with the base that the body can use to make up any deficifiencies. I have found long term pain and morphine use imbalances hormones and this plus floating in geothermal baths (sadly not in UK, althouth floats which give a similar effect of taking weight off nerves therefore reducing pain can be bought from reference below and used daily for a week or more really help and the effects last for many weeks afterwards. The claims for floating are that it reduces adrenalin and cortisol and I believe (dont have ref. with me, see below) increases oxytocin and dopamine. Ref. float.is It is easy to get into a healing state of meditation and if you are lucky enough to go to geothermal baths abroad ( Iceland, Budapest), even better. Good luck you both.