Chronic pain recovery ... at a complete loss
Some might find this a very strange situation to be anxious and/or
stressed about, but this is in all sincerity a very daunting and
overwhelming prospect for me. I don't even know if I should post this
here as it somehow feels wrong, but I genuinely don't know where to
turn. I feel like I am stuck between two worlds ... is there even such a
thing as "post chronic pain support"
I have had a major shift in my life
and am utterly stunned/shocked. For virtually my entire life, I have
been struggling with chronic pain. Two weeks ago, I was started on a
new regimen for "afferent barrage"/hyperalgesia, suspected to be as a
result of either acute injury or excessive pain associated with a
connective tissue disorder diagnosed at age 28.
It took two weeks to
slowly reach therapeutic level, and the joint issues still persists as
well as the associated pain, but virtually all the "background" pain has
now gone and, having grown up with the perception that constant pain is
somehow "normal", it is an utterly foreign and confusing sensation to
me.
I now sit, walk and sleep more comfortably, literally everything I
do I get giggles over as I keep expecting pain, yet all I feel is the
almost soothing sensation of the absence of it.
The biggest
revelation, and one which utterly shook me to the core, came when I had
to wrangle my dog to the vet today and was expecting to be in
excruciating pain when I got home ... and yet there was nothing aside
from this comfortable sensation that somehow gently tried to tell me I
am tired? This wasn't funny any more, this was scary, heart wrenching
and confusing all at the same time. The thought that "being tired
doesn't and shouldn't hurt" nor that it is something that is/should be
"hard" to bear as my experience had been up until this point, had me
utterly in
tears in that moment.
I feel lost and torn over the past 42 years of suffering with pain that I didn't even comprehend the extent of till now. I'm angry over the career and opportunities I have lost despite a diagnosis of Bipolar having played a not so insignificant role. I'm even considering that perhaps the psychological effects of the chronic pain that overlaps that of Bipolar, was hiding an all together different underlying issue other than a mood disorder.
I don't know what normal is, at all. I don't know what tired should feel like or natural muscle fatigue or muscle strain from being unfit. I have to learn all over what my limits are and how to guard and protect my sensitive joints. I am scared that without the background pain limiting my activity, I won't be as careful and might end up injuring myself more frequently.
I need to reassess whether I finally can and/or should attempt simple exercises like walking around the block, something which is still limited by my bad knees but which seems a lot more achievable without the constant pain I used to feel while moving/walking. Altering course, dodging obstacles and just staying upright demanded effort and concentration in order to avoid pain as much as possible. Now, I just get up unassisted and walk without a care and it has me flabbergasted.
I need to figure out whether I should attempt to return to the job market. I still can't drive as my patella slips when using the pedals, elbow hyper extends and my hands start feeling like someone hit them with a ten pound hammer from gripping and manipulating the steering wheel, but still, getting a lift and/or working from home may be an option. Perhaps I can now even attempt to reinvest time into writing my own software again. Then again, I still have the fear of the Bipolar, or what ever it is/is left of it derailing things and dumping me into crisis ... again, not to mention the uncertain nature of the future of software and software development. I don't know what else I could/would do though.
And perhaps I am moving too fast and thinking too far. It's only been two weeks and if the efficacy of this treatment doesn't last, I am going to be even more shattered. I am just, completely and utterly overwhelmed and shocked and I don't know how to move forward or what to live for, strive for or attempt and not attempt.
Just about everything has changed and should change, as doing any less would be wholly ungrateful.
I'm just completely at a loss 😳
@Orthrus
I'll start off by saying congrats on finding an effective treatment! That is a great thing to do when dealing with chronic pain.
I think it's totally understandable that you're feeling as you do. Whether or not you consider a chronic condition to be a part of your identity it affects your identity via how you express yourself, things you get involved in (or not), etc.
You are going through a major adjustment, just as someone who starts school, or using fictional popular culture examples, a character who discovers they have a superpower. It impacts a fair bit of your life.
I think it's also incredibly normal to not realize how much something like pain impacts us when we have lived with it for a long time. I've been asked if I would have had kids if I didn't have chronic illness - I have no idea as my entire life would have been different, and I can't even say all the ways how it would have.
I think this type of adjustment also doesn't get enough attention or support. Again, comparing it to starting school, there's an orientation, you're surrounded by others going through the same experience, there is info about what to expect, there are people to connected with who went through it a year or 2 before. With diminished chronic pain you don't have the same peer grouping around you.
It makes sense that you're conflicted about how to react, not knowing if the treatment will be just as effective in the long term.
My tips would be to be gentle with yourself, it's a big adjustment. There isn't a 'should' emotion and it's normal to feel a mixture of emotions. Put more focus on the short term than the long term to start with. Try to enjoy some of the new freedom! It's ok to grieve some of the previous things you missed out on that you didn't even realize at the time.
Thank you @AffyAvo I really appreciate your input and reassurance.
It is indeed a lonely place to be, as you compared it with school. You don't have any friends yet and don't know if you are going to make any. Your reassurance has helped immensely ❤️
You are right in that I need to take things slow as a lot may still happen. I have spoken with my GP about the Bipolar and she agrees that I need to get a reassessment, if only to get a good once over of my medication but she also advise I do it at the start of next year to give enough time for the medication to stabilize as well as the fact that it being the end of the year, my medical aid may be too depleted to pay for a specialist consultation.
@Orthrus Hopefully you can find support including here that makes the transition less lonely!
It sounds like you have a supportive GP which is great. A bit frustrating access to help is affected by things like medical aid but seems like waiting a bit to let things stabilize works out this time.
@AffyAvo
I am extremely grateful for this new doctor. She is literally the first doctor that has tried to improve my situation rather than just trying to "maintain status quo". It was a blessing in disguise that my usual doctor had moved.
I had tried so hard over the years to get proper help but it had never born any fruit. My treatment escalation stopped short of opioids due to drug sensitivity and addictive personality as a result from, what is thought to be a mood disorder. As a result, it was always either a case of pile on the anti-inflammatory's; which does help for my joint issues but has no clinical effect on nerve pain, shrugs of "it is what it is; there's nothing that can be done", surgeons that run for the hills when they find out my joint issues is due to a CTD and wants nothing to do with even attempting surgical intervention, and even doctors getting angry at me and shouting me out, stating "It's a clinical diagnosis, what more do you want!".
Ironic then that now, that for once I did not try to push for assistance, I finally get the help I so desperately needed. I wasn't even there for the pain as I felt it was a lost cause. She was asking about my medical history as I was a new patient to her and she needed a complete picture.For a very long time I have understood and accepted that they will never be able to do anything about the underlying cause of my pain, but the lack of "will" to even try and assist with improving a patients pain and/or quality of life when, and perhaps even more crucially so, nothing can be done for the underlying cause, has always left me flabbergasted.
Yet, the pain specialist I saw that first suggested an alternate
cause to my overwhelming chronic pain, over and above that of my joint
issues, were in fact a disillusioned anesthesiologist. He told me he became a pain specialist because he was tired of seeing patients in pain and how the WHO prescribed
"stepped pain management plan" was wholly inadequate for non terminal
patients. The current accepted Long term pain management plan, was apparently never intended to
go beyond terminal life expectancy and was created for cancer patients
and the like, when the chances of recovery from those conditions were still very
low to none.
Now I don't know just how much of that is true and/or valid but it makes a whole lot of sense. Hopefully in the future, more effort will be made to understand and treat the fallout from conditions which has no permanent solution and find a more effective long term treatment for non-terminal, chronic pain patients.
