I feel horrible...........

[Mrs. Hermit]

You may be on point about your whole system reacting to your knee pain. With fibro, it seems like the system gets primed by a "real" pain to freak out about any pain or discomfort. My fibro pain improves dramatically if I can just stay out of physically-caused pain for a while. Even something relatively small like my feet hurting after a day a work can start the chain if I am not super careful to stop the pain before I try to sleep. If I go to sleep in pain, the next day will be worse. And the painful days build on each other--one bad night leads to a bad next day, leads to a worse night, leads to a much worse 2nd day....It all seems to snowball.
And of course constant pain and incomplete rest are so good for our mental outlook--NOT!

[CathyA]

Simpleminded, I can’t really talk now but I just wanted to say that I missed your post above before I posted my last one and I wanted to say that it was an excellent post and I’ll talk more about it with you tomorrow.
Mrs. Hermit.... it’s hard to believe that one pain can cause your body to react to it but I think you’re right. It’ll be interesting to see once I see the ortho doc if I get my pain under control if the other things settle down. I sure wish they’d figure this fibromyalgia thing out.… And give us some better options. Thanks again everyone!

[Gardnr]

I'm wondering if a lot of this is from my bone-on-bone knee. It hurts a lot and has hurt for years. Some people think I'm stupid for not getting a replacement, but I don't want one. Period. I would be interested in the stem-cell thing, if I live long enough for it to be more widely available.

then I will go see the ortho doc. But I have the feeling he'll say......"nothing left but a knee replacement". I would be open to even having surgery to somehow straighten out my lower leg. The doc who "trimmed" my meniscus in that knee 12 years ago failed to tell me that my lower leg would probably bow out.....which it did, and then that cause a lot of foot problems. Don't these guys know that the foot bone is connected to the knee bone and the knee bone's connected to the thigh bone, and................Thanks for listening.

I'm surprised to learn you are a RN and your DH is a Dr. You've been living with bone-on-bone knee for years? You are grinding it down with daily living. Your lower leg didn't "bow out" your knee is grinding down (medially I suspect from your description) and that's where the deformity is that is causing the "bowing" and the "foot pain". And yes, menisectomy is a solution for a time but missing that "joint pad" begins the bone wearing.

Knee replacement is necessary if you want to stop the knee pain. There is no stem cell therapy evidence to regrow all the cartilage in your joint. There might be i 20 years.

I do understand the reluctance to do it. It's been 3y since my knee injury. I too have had the arthroscopy and shaving of the injured surfaces. But I'm done. June 6 is D-day. I'm super excited to think that the pain will be gone and I will be able to stand up straigtht, be fully weight-bearing on it, and walk a normal gait again! Can't wait to power walk this fall!!!! Will it be a fun summer of rehab? No. But oh I cannot wait for September!!!!

And you're right. It's all connected. The bad knee WILL cause many other problems-I'm having a lower back twinge I've never had before. If you saw my gait you'd see why.

It seems you KNOW this is the answer to much of your physical symptoms. You just don't want to do it. I cannot understand why.

[CathyA]

Gardnr........I guess that's a fair question. But DH being a doc and my being an RN doesn't really have anything to do with it.

Some people go for the knee replacement and some don't. I suppose there are many factors that go into the decision to not have a replacement. First of all, they don't all work out well. Of course the knee surgeons want us to think they all work out great, but a number don't. Having fibromyalgia, my body reacts differently to pain than someone who doesn't have it. TKRs are not without problems. And many need re-done after 10 years.

And some of my reasons for not wanting one remain unexplainable to myself. The surgery is a very violent one. The idea of having bones cut off and covered with metal and plastic; a fake knee cap. Not to mention the need for antibiotics before dental procedures, when my GI tract is already a mess from antibiotics and my mouth is filled with old crowns. Also.......we complain about health care costs......well, how many replacements will be available in the future? I wrestle with how much we could/should do to keep living, and how can we be surprised at health care costs when we do some of this stuff routinely that costs $20,000++? And why can't we accept decline/aging/death and will go to any lengths to deny it?

Also, we live 25 miles from where PT would be and you have to go every day for weeks.

I understand that I should stop bitching and moaning if I'm not going to have everything replaced that hurts. Some people don't have their bad teeth worked on....but stay in pain. Some people don't have lots of things done that "might" ultimately improve their lives. LOTS of things go into these decisions........Money, fear, trying to balance physical and emotional pain/fears. There are tons of factors Gardnr. I'm happy for you that you feel totally okay with this and I hope it works out for you.

Personally, I would rather have a prosthesis.

I admit that I have an incredible phobia for some things. DH isn't as supportive as I wish he were about working some things out, so I'm alone in that respect. Phobias are very real and aren't a matter of just putting on my big girl pants.

Good luck to you with your surgery and recuperation. I hope it all goes well!

[JaneV2.0]

I'm with you re knee surgery, CathyA. I think of it as an amputation. And going daily for PT for weeks?

I'd be a candidate for two TKRs and a hip replacement. Fortunately, I'm just lame--the pain level is very manageable just with aspirin. I may investigate the possibilities in a year or so, and try something less invasive, or not.

[Tybee]

I remember reading years ago when I was dealing with cancer and looking for help, in one of Bernie Siegel's books, that if you felt a treatment was wrong for you, it was wrong for you. that as a patient, you should get in touch with those strong feelings. So the knee replacement might be ideal for one patient, and a bad idea for another, just based on what the patient felt and thought about it.
It made a lot of sense to me.

[JaneV2.0]

I remember reading years ago when I was dealing with cancer and looking for help, in one of Bernie Siegel's books, that if you felt a treatment was wrong for you, it was wrong for you. that as a patient, you should get in touch with those strong feelings. So the knee replacement might be ideal for one patient, and a bad idea for another, just based on what the patient felt and thought about it.
It made a lot of sense to me.

I read Dr. Siegel years ago, and thought he was very wise. In fact, I just sent Love, Medicine, and Miracles to my stroke-impacted relative.

[Tybee]

I think that was the book, Jane! Wonderful choice, and he has lots of positive thing to say about "difficult" and "non-compliant" patients, along with a real appreciation for what doctors and medicine can do to help people.
"

[Teacher Terry]

I am not a big fan of surgery due to the risks, etc. But if I was in bad pain everyday I would certainly get the replacement. Everyone that I know that has gotten one has been thrilled with the results.

[JaneV2.0]

I think that was the book, Jane! Wonderful choice, and he has lots of positive thing to say about "difficult" and "non-compliant" patients, along with a real appreciation for what doctors and medicine can do to help people.
"

That "non-compliant" label makes me furious. I'm under no legal obligation to submit to medical personnel, and would make that clear in my records, if necessary. I would be proud to be considered "difficult" if being so was in my best interests.

My relative has already "fired" one physical therapist who opined they would never walk again. I think of that kind of thing as medical voodoo, where some self-anointed oracle essentially performs a "bone-pointing" curse on the patient--what Siegel calls "false no-hope."