The first rule of chronic pain management is pacing. Finding the exact amount of activity you can do without causing a flare-up of symptoms is almost an art form. The trick is to work out your time limits on activities such as sitting, standing, walking etc., and how long you can do each activity on a good day and how long you can do them on a bad day.
Pacing is a concept that pain specialists and pain psychologists instruct every client who is suffering from chronic pain. Many chronic pain sufferers are naturally far less active than they used to be and as a result, you may have noticed yourself trapped in a cycle of ‘boom and bust’ with activity and exercise.
An example of this is someone who wakes up one day and feel they are having a ‘good day’ and so decide to catch up on things while pain levels are manageable. Later that evening the symptoms are flared-up again, resulting in extended rest and ‘bad days’. Eventually it settles and the pattern is repeated again when they feel a bit better.
Another pacing problem is around those day to day chores that need to be done. These are the normal Jobs at work and home that build up around us. If there is a day when you feel better the the temptation is to try and do everything all at once because you don’t know when the next opportunity will be.
A third approach is the ‘never give in’ attitude. Refusing to let the pain beat you and stop you from doing what you want and need to do. This is when it feels you are at war with your pain and you are not going to let it win; the result is harmful on both a short and long-term basis.
With all these ways of approaching activity, it is followed by more pain and for some more inactivity follows as you try and settle it down – the ‘boom and bust’ cycle. Your baseline level of fitness never really improves – if anything it gets worse.
Repeated flare ups of pain lead to more feelings of loss of control, anxiety and isolation as the cycle of chronic pain continues and even worsens. A pacing problem is basing your activity level on how you feel (doing more when you feel good and less when you feel bad).
Good pacing involves basing your activity level on pre-set, reasonable goals – not on your level of pain. To remedy a pacing problem, you will need a Pacing Plan that will help you to gradually increase how much you do of an activity, slowly and safely.
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Bananas5
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I agree totally with you on this. Despite spending weeks learning how to pace at the pain clinic I'm still a victim of boom and bust. My problem is that I hardly ever sat down, worked full time and helped on our dairy farm then off to gym and swimming pool. I really wish I could change my mind set as in the long run I would have less pain. Thank you for bringing this subject up xx
Unfortunately, pacing sounds nice. However, it is problematic as it ignores things that need investigating by the pain sufferer. It enables the medical profession to feel pleased with themselves for doing little or no investigation.
Managing chronic pain is not about pacing, it is about investigation. It is observing what takes place and making decisions about learned experience.
Things that need investigation:
Have I got referred pain? This is pain caused by pressure on nerves that feed into the painful area. For example I have extended discs in the neck. This can cause massive pain in the arm. To prevent massive pain in the arm I must be aware of a slight barely registable discomfort in the neck. I have to do mental work not to tighten onto nerve roots. This is not pacing.
The above is an example of where pacing would fail and cause grief. Sleep is highly important. Good control of muscles requires getting enough sleep. My extended disc problem interferes with my sleep. I have to know if I am putting pressure on nerve roots and take the pressure off them when required. The sleep reduction requires that I catch up on the lost sleep at some point during the day.
I have a toolkit to enable me to keep the pressure on the nerve roots as low as possible. Meditation and mindfulness, Alexander technique, t'ai chi and McTimony chiropractic sessions at regular intervals.
Follow what you mean; only thing that raised the hair on the back of my neck was chiropractic sessions. Too many chiropractors cause more harm with "adjustments',,,,to the point of herniated discs. Deep muscle massage therapist is much safer in my opinion.
Not all chiropractors. Mine is a wonder and so much more than a chiro. With chiropractors using word of mouth reviews is a good start and one consultation to test the water.
I am so glad! Good doctors of any branch of medicine know their capabilities and their limitations. I was not meaning to criticize your doctor at all......and you are correct about word of mouth is a good start. I had several clients when practicing law that didn't get checked out by a neurologist before going to a chiropractor. That chiropractor in both cases overstep his diagnostic abilities or his hands in care, resulting in disc problems requiring care by a neurosurgeon in either removing the disc that herniated and fusing, or shaving a disc......and a neurosurgeon's reputation gets around too......they do not always have a good reputation either. Thanks for your reply.
I agree with you that a chiropractor can cause harm with adjustments. This is why a chiropractor has to be trained to tell the difference between a condition that must not be adjusted and one where an adjustment is the right thing to do. There are definitely bad chiropractors out there. Hence the need to network with people to find one with a good reputation.
In the UK they are required by law to be registered before they can practise. Bad chiropractors need to be struck off.
Chiropractors like other "doctors" are regulated in the US too, but there is a saying...."What do you call a medical school student who graduates last in his/her class?"
Answer: Doctor.
Don't think I know of anybody who asks their doctor in any field of medicine where they graduated in their class, and no document on their wall say where either. Maybe we need to change that?
The reason I encourage a visit to a neurologist before consulting a chiropractor is the former can determine if there is a disc issue and that the wrong call or manipulation of it can cause permanent paralysis. Thanks for your reply.
Thanks for the reply. You have pointed out useful thoughts. I am in the UK so there is a different culture than what is in the US. In the UK chiropractors tend to be the second port of call after checking with a doctor. Doctors in the UK are free and chiropractors you pay for. Unless you mange to persuade the NHS that chiropractic is the right treatment for what you have and hence the NHS funds the treatment.
The important thing is how can we the patient obtain the right tools to make the right decision as to what is the best treatment for what you have? How can we investigate our health disability?
I have severe pain in my sij caused by 30 years of bad posture. This can never change or be rectified.
If I spend 30 mins gardening it is extremely painful and I can not move.
If I spend 20 mins gardening it is fine. I have done something I enjoy, garden looks good and I am in no worse pain..... happy to do some more another day
This is also investigation. You have investigated and found 20 minutes is a good length of time. You can investigate further and study muscle behaviour. Injury may never be cured. Management of injury can be improved by studying muscle behaviour. An Alexander teacher can give you some guidance on this. A yoga teacher who has experience of the subtleties of muscle movement can help you with this.
Muscle control ability can be quite variable depending on the sleep you had the night before. So a cat nap before undertaking gardening may improve the way you do the gardening.
Only earned recently that starts to form in our"tween" years....due to the rapid bone growth and if certain types of athletic sports are played and the muscles pull on the backbone unequally etc., causing permanent curvatures in the spine.
I remember when I was in grade school a girl had rods in her back the whole summer to straighten her backbone Now, doctors order children at risk at this age NOT to participate in athletics for maybe 6 months, do the tests and may say no athletics for another 6 months., etc .
I guess until that growth spurt has eased and there is no risk of developing muscles which may pull the backbone off center. I have it; had no idea, and don't know if anything can be done. But I'm looking into it.
Have you ever experienced expressive aphasia when your pain level has continued to escalate, even though trying to pace like you described? Due to accidents involving a fall 34 years ago and collision by semi-truck 18years ago, had to have neurosurgery in my upper spine to get the use of my arm back and the ability to recover any movement in my leg. After the truck hitting me, my lower back was injured.
I do have some brain damage from the truck collision. Lately had epidural to silence the pain in my lower back and leg, and aphasia popped up after 4-5 days...never had that happen before. Everything I read says this aphasia follows a stroke........that has been completely ruled out.
Having a pain epidural in my upper back and neck area in a week to quiet that area down, including my upper arm and hand use. Several pain specialists, a neuropsychiatrist, and the neurologist have explained the brain can listen or handle only so many pain signals at one time.
After my lower back and leg were aided by the epidural about 2 weeks ago, that opened the window to the brain to "hear" or recognize my neck and arm were "screaming" for help. Hence the epidural scheduled for Monday. Hopefully, the two epidurals close together will provide "vacations" for both areas so I can go back to sort of pacing you described for at least 6 months. When I was still working, could not do 'pacing" due to the demands of practicing law.
Will appreciate any feedback you have to offer. My first accident was when was 34, over 30 years ago. The second was 18 years ago. Have to use epidurals as oral pain meds confuse my thinking, memory, etc. Couldn't work without the epidurals to ease the pain enough to work, along with walking and swimming,.
Doctors are trying to figure out why the aphasia has popped up. Looking to see if it changes after Monday's epidural. Last time It began 4-5days after the lower back epidural for my leg over two weeks ago. Did not decrease or stop until about a 12 days after the epidural. Completely back now. Can't get the words out. Not stuttering or stammering. Feel like voiceless giraffe only I don't know how to spit like them and this is really beginning to scare me.
Information or input from everyone would be appreciated. We know it is not caused by my blood pressure and 17 tests, scans of my brain, blood work, echoes of my arteries, my heart etc., showed absolutely no evidence of TIA or stroke and no evidence of a TIA or stroke or likely hood of one in the future.
Again thank you for letting me tag along. This group really appears to be informed. Really thank you...maybe someone has run into this aphasia issue.
Not know how. Am flat in bed, speech is now affected again and another surgical procedure scheduled for Monday and I don't know how to cut and paste this into a post format. And still none of the doctors now why the aphasia is back in full force.
Suggestions? Is there someone out there who knows how to do this?
I just made a post asking for anyone who knows how to convert my reply into a post, I would greatly appreciate it. We'll see. Thanks. Just can't do much lying flat with lap top on chest and black cat on my head.
*Triggers for mention of sexual assault, various types of abuse, and neglect*
Interesting.
This is long, sorry.
I've had pretty severe MH problems since I was a child (although the DWP "cures" them every year or so 🙄), and I've been in and out of therapy for 2 decades, and although I've improved somewhat, I never got better.
My MH has worsened significantly in the 10 yrs since I became physically disabled. A series of traumatic events really didn't help, and interacting with the DWP seems to trigger me to lose it. nd my life fell apart.
I've been seeing a fantastic counsellor for 4 years, who I was sent to by Rape Crisis. Unsurprisingly, she really understands trauma, and we've dug up a lot of it from my childhood, adolescence, and adult life.
2 years ago I happened upon an article about Complex PTSD, and it was like reading my life story. I've been reading about trauma on and off ever since. My psychiatrist and pain psychologist unofficially diagnosed me with C-PTSD a year ago, but I didn't follow up because I became homeless soon after. Talked to psych a couple of weeks ago, and he said he'd need to reassess me, but is pretty confident that I have C-PTSD. I've been doing a lot of reading on trauma for the past year.
Complex trauma, especially in childhood, is associated w/ a much higher chance of developing a big list of medical conditions later in life, such as fibro, chronic pain, autoimmune conditions, heart problems, other MH problems, etc. See the Adverse Childhood Experiences (ACE) Study at acestoohigh.com/aces-101/ , the most important and interesting MH study you've never heard of!
Essentially, the more ACE's you experience before the age of 19, the worse your health outcomes. Additional traumas in adult life can trigger the earlier stuff, and/or build on it.
There were 10 ACE's in the study (although others have been found since), including sexual abuse, emotional neglect, witnessing domestic violence against a parent, etc. You get a point for each one you experienced before the age of 20. Most Americans (study done in the US) have at least 1 ACE. Having 4 ACE's hugely increases the chance that you'll develop the diseases referenced above. Higher than that, and you're almost certainly going to end up with chronic illness. (I have 7 ACE's - eek!)
This isn't anything to do with our illnesses "being in our heads"! Trauma causes physical Fight-Flight reactions - tightening of muscles,, faster heartbeat and breathing, often... Er, sudden evacuation of contents of stomach/intestine/bowel, among other things. Going through long-term trauma (living w/ someone who abuses you as a kid, or in a violent relationship as an adult, for example) and/or going through a number of additional traumas over your lifetime, can affect how your brain and body develop. Essentially, you develop symptoms of traumatic stress disorder, PTSD, C-PTSD, etc. Being in Fight-Flight all the time is a major stress on your body and mind, and can cause a whole range of illnesses (there are treatments).
I'm writing this way-too-long comment (tired & tramadol, sorry) because your description of car accidents, unpleasant medical procedures (traumas, I suspect?) a lot of an article by a C-PTSD survivor. It discusses what happens in your brain when you get triggered (lots of MRI studies on this, lately). One of the most interesting findings is that the language centre in the brain (Broca's Area?) almost completely shuts down, leaving the traumatised person with serious problems communicating, or unable to communicate at all.
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Pacing
What has helped you with managing your pain?
How to explain your pain
Chronic lower back pain. Summer flare up has begun. 
