August 26, 2019 at 8:55 am #13450Cystic Fibrosis News ModeratorModerator
Elizabeth Rogers says she hesitates to speak about her constant pain because she fears how she will be perceived by other patients. Read more from Elizabeth here.
Can you relate? How much pain do you experience and are you open about talking about it with other people?
August 27, 2019 at 11:22 am #13459Paul met DebbieParticipant
If there is pain, there are four options. One could (1) accept the pain and make it an integral part of the experience of life, and that will basically end it as a separate thing. The pain would still be there technically, but there would not be any individual entity (ego) to take ownership and say: “Ouch, that’s my pain”. This requires a process of de-identification with life’s phenomena in general and could take some practice and perseverence, sometimes for several years. One could (2) resist the pain, and that causes suffering. This is generally what most people (unconsciously) do, because whe are taught that way (“you have to fight, don’t give up!”). Walking away (3) from pain usually is not an option, because it is linked to our body and goes wherever we go (option 1 could be seen as sort of a higher form of walking away).
The fourth option is dealing with it, in the sense of trying to get rid of it (as much as possible). If we do this from resistance, this will only give unsatisfying results. So the first option (acceptance in some form or degree we are able to) is always the best start anyway. From acceptance we mostly are much more succesful in dealing with it and finding solutions.
Where does talking about pain come into this? One could talk about pain, but this in itself will not solve anything unless we talk about it at the right time at the right place, and nowhere else. That is, at your doctor’s office. Talking in itself does not solve anything, it tends to increase the attention and the suffering, but when it comes from acceptation (1) and is pointed at a solution, it might be helpful. Your doctor knows more (sometimes) so his/her input might lead to a solution that you have not thought of yourself. Sometimes talking about it to other patients could have the same intention and effect, but indeed one can or want not do this too often at the risk of being viewed as a whiner (by others or, worse, by oneself – don’t be too worried about how others see you).
I am a bit confused when I hear Elisabeth say that on the one hand she does not want to experience the pain but still she refuses to take medication that could help (especially pain medication). This is not a very helpful attitude, since it is a combination of non-acceptance and non-dealing, which leads to great suffering, but I suspect it comes from experience of taking medication that either does not help very much or has unwanted side-effects, or both. I would expect her to gladly take any medication that would help her deal with the pain if the side effects would be minimal or acceptable. Sadly, medication like that is not easy to find and it is a good thing to point this out to our doctors and caregivers so that something can be done about it. On the other hand, chronic joint pain/arthritis is not an exclusive cf-symptom (so I would not call it “CF-pain”) and there is much research going on in that area already so don’t give up hope.
As Elisabeth points out, over-the-counter anti-inflammatories help but her experience is they only help for a short time and not completely remove the pain. I am not a doctor so I can only offer my own experience as a patient, which is only relatively important because I am not you and my pain is not like yours. But I will share it anyway because it is spectacular and it came from grace, not from talking or from my doctors.
I used to suffer from (not severe but still annoying) joint pains until I was so lucky (!, yes indeed) to fracture two ribs after a fall. I got painkillers, heavy ones that made me drowsy and I got rid of those as soon as possible, but also “light” ones, one of which was diclofenac which I took for several weeks, long enough to notice a big change and had not expected. Now, diclofenac is a painkiller but also a strong anti-infammatory that is used for joint pains since time immemorial and it works longer (mostly up to 12 hours) than other nsaids like ibuprofen (that last only for 4-6 hours). So, it’s easy to dose with only 2 (or max 3) gifts per 24 hours. In my case, I have not suffered from joint pain since I started to use it. I must admit that at that time I would not have not continued the medication only for the joint pains (I could live with), but I did because it also effectively reduced my airway inflammation so drastically that I did not need any IV – antibiotics since either (I had 5 IV’s per year before that) and can now suffise with oral sustaining antibiotics. Now, this is only my case and I am not advocating anything to anyone. I only tell this to explain why I stayed on the diclofenac (twice daily 50 mg) since. It’s been more than 5 years now, I had no side effects from it, no joint pains anymore and it also calmed down my airway inflammation to the lowest level I ever experienced in my life (just turned 56). For me, the latter is the main reason to continuously use diclofenac, but I could imagine for heavy joint pains alone I would do the same.
My doctors would never have come up with this solution, and they were as surprised with it as I am. So this shows that even talking about your complaints with your doctor is not always a solution, one needs the grace of the universe too, even if it comes in the form of breaking 2 ribs. But hey, who would complain?
May grace be with you!
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