I fought taking heavy duty pain medication for a long time, but all that happened is that my pain got worse and worse over time and I ended up not being able to do much more than sit in my recliner all day and watch tv while I was engulfed in this pain. Couldn't sleep at night from the pain either so there was no respite and I just got more and more depressed and exhausted.
If you fight even the medication that works for you, then it can't give you the respite from your pain that you need to get the strength to cope with living with CP. One of the biggest lessons I learned at pain management was to stop fighting my pain and being so angry at it...because this, in turn, makes our stress levels and our pain worse. Our body uses up so much energy just coping with CP; fighting about everything (including medication that helps you) only takes up even more energy and our bodies just can't cope with all of that and end up exhausted and extra depressed.
Hoping that you can put down your sword for a few days until you start your pain management course and give yourself a rest from the fighting.
The following user(s) said Thank You: Paulfromperth
In answer yes it has helped living with someone who can understand the pain that we both are living with.
Especially since it is a very misunderstood condition. We have had long trials with Doctors and various people who do not understand what we are going through. Sometimes we have found that the other one can get through to people who cannot understand not always but sometimes.
I have attended two different pain clinics both very good both very different. One was in 1994, so the understanding of RSD was very different. The second pain clinic we are just at the tail end of. The pain clinic was good for me but absolutely hopeless with my husband. Only one member of the clinic was able to assist with both of us and that was the Physchologist.
The very sad state of affairs with this pain clinic is that there is now no Drs attending the new patients.
We are currently adapting again to try and find a specialist who can and will help us.
It is a long and hard road. A person's pain is a very personal issue and I have found that most professionals have no true understanding.
The statement that you have to live with it even though correct is atrocious and very debilitating. It is much more appropriate to be told that we need to learn to manage the pain and our lives.
When there is more than a paragraph in medical texts about a lot of these problems we may see better attitudes.
Thank you for sharing you and your husband's journey, Terry.
I thought your words: "The statement that you have to live with it even though correct is atrocious and very debilitating. It is much more appropriate to be told that we need to learn to manage the pain and our lives." was so well put.
I had an "ahha" moment at my doctor's yesterday. I had been upfront with him about how putting psychological connotations on the weird reactions to medications that people with CP have because of central nervous system sensitization really adds to the stress of suffering from CP. It was a 'break thru' visit I felt cos he really listened and I felt 'heard' which is so often not the case with CP. What I also realised is that doctor's terminology (which they no doubt learn in med school) is a very poor communicator....what he apparently had been trying to say to me is that we are holistic beings with body, mind and spirit; what I heard instead was I thought he was saying it was all in my head up til that point.
I also asked him about some relaxation treatment and that none had been offered to me so far, but he said with the pain levels I had been in til recently going on Norspan patches, that I would have been "resistant" to relaxation therapy up til now. Usually, I would not have asked what he meant by that and taken it onboard that I had been doing something wrong as in the word "resistant" has connotations of being actively opposed to something. However, with a new found voice I asked what did he mean by that and he explained that he thought my body has been in too high pain levels to be conducive to relaxation therapy. That was my real ahha moment cos I realised that I interpreted his terminology in "people speak" and instead he was talking in "doctor speak" which seems to be a whole other language disguised as English! And seeing as with language we draw on our own interpretation of the meaning of a word through our own experience, I have many times come away with a misinterpretation, which I would have done yesterday ordinarily and taken onboard that he was saying it was my fault and I had been resisting relaxation.
This experience and your comment made me realise that there is a real need for a 'bridging' of the huge divide between doctor/patient communication.
Awareness is one thing however...not sure how that's ever going to change. Its almost like the whole medical profession needs a giant tune, service and overhaul!! It probably needs to be done by someone from without, but the wanting to change needs to come from within the medical profession....hmmmm...
Sorry to hear that your latest pain clinic experience was such a mixed bag for you and your husband. It seems pain clinics vary enormously plus the public ones seem terribly understaffed and underfunded.
I can understand the whole process that you have encountered.
I feel that he medical profession needs to review its whole treatment and attitude to pain management. No patient is in too much pain to benefit from relaxation, meditation, tai chi, yoga based treatments. The studies have all shown that the earliest the intervention with relaxation and holistic treatments the better the results.
The difficulty again is education, cost and availability of treatments. It is accepted to try many and all medications and see many so called specialists but alternative therapies are not readily accepted.
We are now encountering more and more a resistance to invasive / surgical treatments. For so long these treatments were considered the only option and often as CP sufferers now attest made the situation much much worse.
We had to take control of our medical conditions very early on as we lived in remote Queensland when diagnosed and only had access to locums for years. We were very lucky to during this time meet a very good naturopath and Palliative care / Emergency Care Specialist.
They helped us obtain a better understanding of our health and situation and greatly encouraged us to try anything and to learn. Most importantly to be in charge and responsible for our health. This was not and is still not a very popular stance.
Our illness requires us to try to retrain our brains. Medically there is not a lot of options for us. We have been likened to Stroke Patients and need to reprogram the signals too and from our brains. it is not a quick or simple task and it is expected take a number of years. It makes for a very interesting life.
I agree with you regarding the early intervention. I was in considerable pain and very scared when a doctor recognized my fear and sent me to a pain psychologist. I also did a group self-managment course that taught me how to manage my own health, how to communicate with health professionals, how to manage emotions etc. etc. It was still a couple of years after the surgery that had sent me into CP, but I did benefit a lot from those two things.
You are right in saying that the medical profession needs to review the whole pain management area. Unfortunately, I can't see this happening any time in the near future. There are certainly many informed health professionals within pain clinics etc. but it is really the GP population that needs to learn more about CP and the people who have it.
Not every day is a good day, but there is good in every day.
"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
I really like hearing what you have to say Terry cos it gives me another view point to think about.
I had been so busy just being rapt at 'being heard' that I had not thought about it from your point of view. However, why it made sense to me is that I have been in such high pain levels for most of the 2nd part of last year that all the Acceptance Commitment Therapy, Mindfulness etc that I had learned in pain management had bit by bit gone out the window because the pain was so intense and I had no pain relief medication that I could tolerate so it just became a matter of existing through the day. The reason I can see the sense in what he had to say is because since starting the Norspan patches recently, it has brought the pain down to tolerable levels so that now I have the headspace to be able to incorporate the self management tools such as ACT whereas before it was just a wall of blinding pain.
I find I have changed along the way cos I went into pain management determined to embrace all the non medication tools available and steer clear of any heavy duty pain killers. But, after my condition worsened last year and the pain escalated and how my life deteriorated and the difference now with some pain relief...I see it as a combination approach. Bringing the pain levels down is enabling me to start rebuilding and implementing all the other non medical tools to some quality of life. For the first time in many months, today I started a new painting...something that I love to do to distract me from pain and bring me pleasure, but had been in too much pain to be able to do.
Thank you for opening discussion about different ways to approach CP. I value your input after dealing with it for so long and would love to hear more about the things you have found helpful.