Sometimes my body dictates what I can do

Hello, I was going to post a paper today about gene mutations leading to thrombophilia and reduce nitric oxide production being risk factors for osteonecrosis.

Unfortunately, I have really bad tendinitis at the moment and I’m taking a few days off from using the computer. Since having osteonecrosis sometimes I get really bad tendinitis in both my arms because my upper body has had to compensate, for nearly a year now, for my legs.

It sucks, but obviously is nothing in comparison to the pain from osteonecrosis, so I just have to lay low on the internet for a few days and try not to pick anything up or do anything strenuous with my upper body.

I hope to post the paper at the end of the week.

10 thoughts on “Sometimes my body dictates what I can do

  1. Gosh! You are so young. I am lucky, I have suffered from AVN for twenty years and am now 66…have had too many part replacements…I no longer remember a day without pain…and, all Pain Management Specialists that I have the unfortune to see…turned out to be “idiots”! Most Pain Specialists are more afraid of the DEA, so are reluctant to prescribe real pain meds that actually blocks the pain, so one may get around and function daily! YES! AVN sucks! But the pain is exquisite! Best to you dear, Write if you desire. Respectfully, Frankie (The Crip) Cromer, Rock Island, Illinois.

    • Frankie,

      That is a long time to be suffering and dealing with AVN. If you don’t mind me asking, are you able to work? Are you able to get around? Did your disease start in one place and then progress to others? I always wonder about other people’s journey with AVN, how they got diagnosed and if they were ever given a reason for why they developed it in the first place.
      I know what you mean when you talk about pain, but I feel what I’ve gone through is nothing in comparison to you. I’ve had AVN so far for only a year and I was thinking the other day I don’t remember what it feels like anymore to wake up in the morning and not feel pain first thing. I’ve been on heavy pain killers for a long time and obviously worry about the side effects and how they will effect other parts of my body.

      Thank you for taking the time to check out my blog! Hope to hear back from you. Best, Cassandra

  2. I went Desert Storm One in 1991 as a civilian. I contracted a sinus infection from a sand storm. The Army Doctor fed me bunches of Prednisone so I could breathe. In 1992, I lost my ability to cross my legs. My right hip was killing me. I thought I was out of shape. Soon I was on a cane, then a walker. In 1993 ORA said it was AVN. I had a THR (R), wish I had had the left done at that time too. Went on Mehtadone for pain until a month ago, when it occurred to me that it was not contoling my pain. So I quit cold turkey. Went through a week of withdrawl, angiety, headakes, diarrea, chill, ate soup. After a week of no pain meds, guess what? No change in the pain! So I am looking for a new Pain Doctor currently, and taking Vicodin, which is good for short term, but not long term. Everyone I talk to says Oxycontin is it. But I have a very high pain threshold. I have leaned that AVN is not “static”. You will not get just worse over time. AVN is “dynamic”. It changes from year to year…good years…bad years. Sit in a chair and exercise your limbs. Stay slim, you need less meds. I am retired. I go out once a day. I am not sure about this winter if I will go out. I may have my groceries delivered. Just take it day by day…that’s all you can do. I just hope I can find a competent Pain Doctor. By the way, AVN is in my knees, ankles, feet, shoulders, jaw and wrists…I really suck! Ha! I walk on 2 canes or a walker. Some years I am in a wheel chair. I have no living family, but friends come every day to see me. I am blessed. Later…

    Frankie the Crip

    • I’m so sorry about everything you’ve been through. It’s unbelievable how many people with AVN got it because they were on steroids. Prednisone is such a common drug and widely prescribed and it’s just so unfortunate to be one of the people that the drug has this effect on.
      I know at this point it probably doesn’t matter because your disease isn’t in its early stages but you know a lot of people who got AVN because of steroids also had underlining clotting disorders that they didn’t know about. When they went on the steroids it made the AVN that much more aggressive which is why it ends up being in multiple joints.
      As I mention on my blog I was never on any steroids there was no indication as to why i got AVN and they told me it was idiopathic. I was completely compulsive about finding out what was wrong with me and found out within about two months that I had AVN in my femurs, which is a really odd place to have the disease. Multiple doctors told me there was no reason why i got this condition, they told me I couldn’t reverse it, that it would never get better. However, I found a doctor, that I write about on here, and I was tested for all kinds of clotting disorders including some obscure ones that even my hematologist had not heard of and I found out i have five different ones which resulted with me ending up with avascular necrosis.
      I started writing this blog because I felt there wasn’t enough awareness about avascular necrosis or enough awareness about what steroids like prednisone can do especially if you have clotting disorders. I also go on all kinds of websites with people who have the same clotting disorders as me and talk about osteonecrosis. Most of the time I think people think I’m just some nut job. As I’m sure you know it’s very hard to explain to someone what osteonecrosis is and what it feels like especially as no one has ever heard of it.
      Once I found out about my clotting disorders I went on anticoagulants for three months and one set of MRIs showed that my disease hasn’t progressed at all and in fact it has started to regress. I just got new MRIs done this week and I’m getting the results next week and I’m hoping to see that the disease has regressed even more. I am definitely feeling a lot better and a lot stronger. It seems that osteonecrosis behaves differently in everybody’s body.
      I’m sure that if I’d ever been put on steroids that AVN would have been so aggressive in my body because of my clotting disorders.
      Did your doctors tell you there was anything you could do to stop the progression of the disease? Is AVN in its early stages in any of your joints? What have they told you to do about osteonecrosis of the jaw? I’m so sorry for what this disease has done to your body. No one deserves to have to go through what AVN does to you!

      • Hi Cassandra, I hope you are having a “good” day. Pain woke me up before dawn, so I have been busy all day. Cooking soup (I like soup), doing laundry, and running out for beer, smokes and chocolate! Had to use a walker today, but everyone opens doors for me…Ha! I think I told you yesterday to find a compression chamber, what I meant was “Decompression Chamber”. If you are still stage one, you can arrest further progression of AVN through “decompression”. Does this make sense? What we have is the same as the “bends”, that divers get when they come to the surface too fast. So, talk to your Pain Specialist about finding a decompression chamber before it is too late. I don’t know where you live, but there are Naval Bases on the east coast with these chambers. Good to hear from you today…talk to you later…I gotta fold clothes! XX Frankie the Crip

      • Cassandra…I am back, clothes folded…as I read you, you are in your first year of AVN…that’s the hardest…you are mad…you are in denial…why me? Cassandra, you gotta get-a-grip and work out a daily schedule…Me? AVN is my life after 20 years…it is normal for me…after a few years…AVN will be normal for you too! Do you work? Are you married? Do you have children? Do you live alone or with your parents? Everybody thinks that if you take strong narcotics, you will become addicted…not true…meds are the key to a better life with AVN! Even my friend’s don’t understand AVN…so I keep a hammer by the kitchen table…and when they say, “I know how you feel”…I hit’em in the shin with the hammer…”now you do”! Later…Frankie

  3. Cassandra…ask your doctor about going into a “Compression Chamber”, like divers go into to arrest the “bends”. I must assume that you are level one AVN…a compression chamber treatment(s) will stop the AVN from progressing fany urther over time. I found this out too late.

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