I just joined this group because I am looking to meet people who understand what it is like to deal with chronic pain. I have had multiple surgeries due to a chronic disease that has required me to have bone drilled from my skull many times. After the last surgery, however, I have come to learn that the pain will be chronic. Apparently, to drill essentially what is a hole in my skull, they have had to cut many nerves that will be permanently damaged. It is very hard to accept that for the rest of my life I have to feel as though I've been shot in the head. Another description would be that I feel like I was beat in the head with a hammer and that someone is constantly pressing hard on the wound. OUCH! I do take a small amount of medication to help, but it is short acting. I really need to talk to my PM doctor about getting this under control- and not just for a few hours a day. Anyway, I look forward to meeting new people that can relate. While my husband is sympathetic, he does not know what to say when I either cry or repeatedly tell him that I am in pain. If anyone gets a chance, I would love to hear about how other people have accepted a chronic pain diagnosis and if anyone has any advice- I'm all ears! Thanks, Keri :)
Hello Keri. I feel the same way as you do. The times where I find it most difficult is when the pain is unbearable for weeks at a time. I tend to have anxiety attacks and the pain drives me absolutely nuts! I have herniated discs in my neck and I had a fusion last year and they only repaired one of the three discs. I'm looking to get the other two fixed, but the surgeon's don't want to due to my age and the domino effect. I physically can not do anything. If I do, it ends up in unbearable pain, so I sit here all day and night with an ice pack glued to my neck. I agree with you, you need a LA med to help you deal with this pain. They work much better then the short acting. I have the LA med with the SA for breakthrough pain.
I had the hardest time adjusting to chronic pain as a kid. However, for me I was actually kinda lucky, because as I grew older my migraines got more intense. So, in a way I was lucky in that I don't remember a life without pain.
However, when I was in 8th grade, I got status migrainous and then it really hit the fan. I got depressed, and basically started to shut down my body because I didn't really have the will to live with the pain.
But then, slowly, I made friends who have chronic pain as well, and they formed a great support group for me. It was reassuring to know that other people were suffering too. No, they didn't suffer the same way I did/do, but they could understand what I as going through, and that was a relief.
I also realized that this was my lot in life, and, after a 2 week retreat to a Buddhist temple, I found ways of just recognizing the pain, but not letting it take control of my life. I started doing Somatic Experiencing therapy, and the trauma of the pain, has lessened as I've become better at directing my attention to parts of my body that DOESN'T hurt. I found that it's possible to accept the pain, without letting to come and destroy what I am as a person.
Sites like this are awesome for the support because everybody is here for a similar reason.
Thanks for your responses. I, too, experience a lot of anxiety, running mom, and can relate. I also think I will do better with a LA med, and only a SA if necessary. I just need to talk more frankly to my doctor. Which is a whole other topic I will post about because I need advice! :)
Dame, wow! That is a long time to suffer from pain! I am sorry you've had troubles since childhood :( Yes, this site is great. It's hard to meet people with chronic pain. I am trying to meet more people so that I don't feel so alone because it makes me very upset sometimes. Can you tell me more about Somatic Experiencing Therapy? I am pursuing biofeedback, but my surgeon also thinks that I have been traumatized due to the unusually high amount of surgeries and intense pain. I am going to look into alternative methods as well as speaking to my dr about changing the meds to something that controls it better. Thanks for the reply!
Somatic Experiencing is very similar to bio-feedback. It's based on the evolution of the nervous system. What happens (at least for me) is that we go through and just observe my body without making judgement, but with curiosity.
I'll then try and find a part of my body that doesn't hurt and focus on that for a while, before switching back to the pain, and then back to the comfortable spot.
the idea is to move from the first two nervous systems, and spend more time in the highest nervous systems.
If you want more info, I can message you with the link I give people who are interested.
Have they tried any meds that can help with the nerve isues in addition to the pain meds? Neurontin, Lyrica, etc? I am still relatively new to the chronic pain and trying to learn how to cope as well. Headache pain is one of the hardest to function with. My heart goes out to you.
We are very glad that you've found this site. We are all here to help you and support you in every way.
I am so sorry for the pain you suffer from. My heart goes out as well. You will find a lot of information on pain management here with members having different treatments. I'm sure that this site will not only be a form of support but helpful as well.
Sorry, I just saw this post of yours. I know we have chatted a lot about cp and the havoc it can wreak in your life.
I am not sure how I actually accepted that my chronic pain condition was a life long one. I know that it took time and it didn't happen over night. I went through the five stages of grief that Elizabeth Kübler-Ross identified some years ago.
I vacillated between denial and anger for years. I even went to therapy, nothing really helped. But the denal and anger probably kept me going for so long.
It was shortly after I tried Cymbalta about 20 months ago (that wasn't effective for me) that I began the acceptance process. I told my physician that the Cymbalta took away my anger but it took away all other emotions also. She said to me, "Aren't your tired? How long are you going to be angry Tuck?"
Those simply words started me thinking. I was tired, heck I was exhausted. It seemed to happen fairly quickly for me then. My anger slowly faded and the acceptance began. Emotionally I have never felt better about my chronic pain. I know those are not the best words. No one feels good about their chronic pain situation but I have accepted it. I changed the way I do a lot of things, accommodating for my pain and limitations.
I think often that is what it takes. One simple sentence or one thing that suddenly makes it all so much clearer. Hang in, it will happen to you too.
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