How to cope with this lifelong friend?

Sadepisara,

I read your story that you posted about a year ago on the knee 1 forum. Oh, you made me want to cry because I saw so much of myself in it. I probably hit my all-time low a few months ago, when the doctors seemed to do nothing but cost money and make me more depressed. It turns out it's very normal for people with chronic pain to get depressed, and that depression can make your pain sensations even more intense.

I finally had a long conversation with my dad about living with a chronic health problem. (He has 30% lung capacity, and like you and me looks perfectly normal, but is often less capable to do certain things). That started me on a journey to learn how to live best with my gimpy knees.

May I suggest starting here:

http://www.tenresolutions.org/index.html


Best wishes,

Daisy

I read your posting. Please e-mail me.
Kristin

Hi! My deepest sympathies for all you who struggle with knee pains. There is many of us, but every individual still goes through their pain alone. My knees were just fine, until I turned 16 and started having symptoms. First one was operated when I was 18, the other when I was 19. When I turned 24, they were both operated at once. Scar tissue (plicas) were removed at every time of surgery. Recovery from the lates surgery (it took place in April 2004) was fine, until I started having short periods of pain in August 2004. It would pass, but in the latest case, it didn't. Now my knees have been hurting like hell for the past 6 weeks with no end in sight. The pain is intense, grating and grinding. At every step. Especially when I sit (I work with computers, sitting in office daily for hours) for long times at once. I went to see an orthopaedist. I was diagnosed with Chondromalacia Patellae. Term that I have never heard before until now. She really did not say much, I got the name of the syndrome only afterwards when I asked some short summary of my case (I like to keep tabs of what doctors have said) via email. I searched information of my case from internet and found out quite a bit. Wonder why doctors never explain things enough. They must know that patients always are afraid to ask as much as they would like. People might feel the need to act like a good patient, be correct and polite and not ask too much. I do this almost every time and always regret afterwards. But I cannot help it either. Therefore I try asking doctors some things by email afterwards. The pain is bad. Doctor only said that if it's any better, my case is pretty common. Then I was told to strengthen my thigh muscles, which could help. I find it very difficult to do anything exercise-like at all, because of the unimaginable amount of pain I experience when trying to do the exercises. Sometimes I honestly do not know what to do to cope with the pain. It's seriously affecting my social life, due to the fact that it's difficult, if not impossible, for the people near me to understand what I am going through. My knee-issues are a story so old that no one takes them seriously anymore. And I was better for some years in between the surgeries. Just not anymore. Only my mother knows how deeply depressed I am sometimes. And even she didn't quite believe me until recently. People find it impossibly difficult to believe that there is pain, to which nothing helps. No pain killers, no rest, no nothing. Nothing helps right now. The most difficult thing is to see a friend's face when you tell then something actually serious and important, like the fact that your pain affects you not only physically, but mentally as well. That is scary. For the others, too. They try to understadn, but cannot. Almost easier feels not to discuss with them, as they cannot know how it feels themselves. To genuinely understand pain, you have to be in it yourself. I try to watch the way I'm sitting, but as being a very short person, sometimes sitting with other leg bent beneath me is the only way to get some support or comfort when sitting in meetings at work etc. I know I'm not doign the exercises as much I should, but I just cannot take the pain! Too many years with pain have left me with very short tolerance of pain or ache. I know I could get help, like going to a therapist or something to learn cope with pain, but in my country (I live in Europe), it's not that easy to get mental help. Therapy is still a big taboo, though the year is 2004. And how to pay for it? I'm still paying for the surgery that was in April (took a loan for it). I don't have that kinda money right now. No one in my family has money that big, so I cannot ask anyone to help either. It has to be on me. I've never been in therapy before, so that also frightens me a bit. What if I do get myself to go to some therapist and he/she is just not the right for me? Sometimes people's chemistries just don't match, which makes the patient feel even more alone in their problems. Hope someone had the nerves to read this ramble through. If you managed, I humbly thank you. Nothing makes you feel better than the fact, that someone took the time to listen you. Read what you have to say. I thank you. And please share your experiences of how to live with pain! Any advice is helpful. Best luck to all of you with your pain!