Deteriorating tendons causing excrutiating pain throughout the entire body…Help needed. Research funding, knowledge, awareness, support groups?
For the past three years I watched my girlfriend change in front of my eyes. She is now 47 years old. She is a beautiful, intelligent, smart, sweet and all around fun person. What is happening to her is tragic and painful for me to watch. I am at my wits end and begging for help from anyone who knows anything about tendonitis, tendonosis, deteriorating tendons, and auto immune diseases.
Marci is my girlfriend. She is quick to give a smile. She has her little annoying quirks like most people but she is the best thing that ever happened to me. When we met over for years ago marci was what some people would describe as a hard body. The kind of girl that would make the guys drool when they saw her in a bikini.
Don’t take this the wrong way. My girl friend is still beautiful. But the change in her has been dramatic, frightening even. Her muscles that used to be hard and strong are now soft and weak. If you barely touch her she bruises like a banana. It’s heartbreaking. She used to be a dancer and was even into martial arts and athletic. But now things are much different. For example when we go to the grocery store she has to use an electric wheel chair because just walking around the store is too much for her. When she does walk it’s agonizingly slow. Pain is clearly written on her face with each step. We used to go out all the time but now it’s very rare and when we do go somewhere it involves me pushing her in a wheel chair. Honestly I don’t mind taking care of her but as you can imagine she is self conscious and even embarrassed.
I wish I could tell you that Marci’s deteriorating tendons were all we had to deal with. As you know in life it’s never that easy. We live with and take care of her Dad who is 74 and almost completely blind. He has had a stroke and has congestive heart failure. Just taking care of him would be a burden on a healthy girl. But Marci isn’t healthy. She constantly in pain. I’ll tell you more about her pain in a minute. Like I was saying she takes care of her Dad. She also take care of her Mom who is also in her seventies. Don’t even get me started on this woman. The long and short of it is Marci’s Mom is constantly in and out of the hospital with a plethora of health problems. My girlfriend is a family girl and loves her Mom and Dad. So when they need groceries, medication, or anything people need Marci and I go fetch it because that’s the right thing to do. To be clear I want you to know I’m not complaining. I’m just telling you what we’re up against here. Obviously Marci’s parents don’t drive, and 99% of the time she doesn’t either. Guess who does the driving. And the shopping, and the lawn maintenance. Guess who hangs a shelf or fixes a cabinet door when it needs to be done. As for me I’m pretty healthy and strong but I am no stranger to pain. I have a failed fusion in my back L-4 and L-5. There are 4 four inch titanium screws in my back. Basically I am in constant pain. It hurts to sit, stand, walk, move, have sex, sleep, eat, and everything else you can think of. With all that said Marci has an auto immune desease that is literally destroying every tendon in her body.
What would it be like if ALL your tendons hurt? In your hips and butt you have large tendons that connect your muscles to your pelvis bone. If those tendons were deteriorating it would be excruciating to sit. It would hurt to walk or even lay on your side to sleep. That is where the pain started in Marci over two years ago and it has gotten progressively worse.
We went to the doctor two years ago when the pain first started and they tested her for Rheumatoid Arthritis it was negative. Then the doctors said she had Bursitis. They said there were Bursa sacs causing inflammation in her butt and hips. They gave her massive doses of steroids and painful Cortisone shots which in her case did nothing to relieve the pain. Do you know why? Because she didn’t have bursitis. It was then that she was first given pain pills. They started with Loratab, then went to Oxycodone, Oxycontin, Roxycodone, and now she’s on Morphine.
The pain that started in her hips and butt is now in her Achilles tendon, her wrists, elbows, knees, and still hin her hips worse than ever. She can’t pick up a plate of food. She can’t open a pickle jar or tie her shoes. The pain is also now in her fingers and toes. She wakes up in the middle of the night crying almost every night. She can’t climb the steps to go to bed without help or change her pajamas. She can’t take a shower without crying because it hurts so bad. There are so many things that most people do without even thinking about but Marci can’t do because of the pain.
Pain is only part of it. There is a psychological element. Yes she is seeing a head shrink and is on anti-depressants. Wouldn’t you be depressed if you were told that your tendons are deteriorating, you are going to be in excruciating pain for the rest of your life and it will get much worse? Also the doctor told her there is no cure. As a matter fact the doctors don’t even know what’s causing it. They do know that hr immune system is attacking the tendons. But what they don’t know is why. All the doctors can do is prescribe pain pills which at this point even Morphine isn’t helping.
I’ve watched my gilfriend’s condition grow steadily worse. I listen to her cry at night. I see the frightening amount of pain pills she takes and I worry about the future. What are the long term affects of so many drugs? Obviously her liver has to proccess all these pills. Over the past few months she has talked about suicide. She told me that she talks to God in her prayers and several times over the past few weeks she’s told God that she’s ready.
I can’t blame Marci for feeling this way. I understand how she feels. Like I said earlier I have a considerable amount of pain myself. But I am Catholic and suicide is not a viable option. That’s how I feel but I’m afraid for her. How can I help her?
There’s also the money situation to think about. My girlfriend had a good job working for HSN. (Home Shopping Network) Do I have to tell you she lost her job? She did. To put it bluntly her ass hurts and she can’t sit at her desk. We bought pillows and cushions, ass doughnuts, kneeling chairs and special made office chairs. Nothing worked. In the end she lost her job. Did I mention I have four screws in my back? I can barely walk myself and yes I lost my job as well. I could tell you times are tough but I don’t need to. You do the math on this one. We have bills and zero income. I can honestly tell you I don’t know where my next dollar is coming from.
My intention for this blog is not to ask for money or even pity. What I do want is information. If anyone knows anything about Marci’s condition or maybe even a specialist that can help please email me. I’ll include my email and Marci’s in this blog. We also want to know if there’s anyone else out there that is going through something similar. I think if Marci could find someone to talk to it would be a huge help. Maybe there’s evena support group.
What about clinical trials? At this point we will try anything. Experimental drugs or even a witch doctor. We’re doing all the natural and herbal things, Glucosamine, Collagen, vitamins, etc.
Thank you for taking taking the time to read this.
email : firstname.lastname@example.org
email (Marci) email@example.com
Below is a link that has a lot of medical info about tendons and auto immune deseases.
Bursitis, Tendonitis, and Tendinosis
Bursitis, tendonitis, and tendinosis are three of the more common collagen diseases affecting us as we age, causing us to look and feel older. Bursitis is caused by arthritis inflammation or by infection.(15) The joint areas most commonly affected are the shoulder, elbow, wrist, hip, back, and ankle. Individuals with bursitis will have pain, tenderness, and stiffness near the affected area.16 As a result, local muscle weakness frequently develops as a result of avoiding painful joint movements, such as those caused by climbing stairs.
Tendonitis, an inflammation of the tendons, has mostly been considered the cause of tendon pain and an associated loss of strength and movement. More recently, researchers discovered that most people diagnosed with this disease have no signs of tendon inflammation. Consequently, medical sciences have come to see tendonitis more properly classified as tendinosis. Today, the terms are used interchangeably.
Tendinosis/tendonitis is caused by a breakdown of the collagen-composed tendon tissue. Collagen contributes to the robe-like structure of a tendon and to its strength. When collagen breaks down, small tears appear in the tendon, weakening it and causing pain. This collagen disease can affect children and young adults just as those who are aging. It is especially wearing on those who perform repetitious task in their jobs, sports, or daily activities. Carpet layers suffer this affliction in their knees, writers in their wrists, and tennis players in their elbows. Resting the painful areas, applying ice, or taking pain relievers can successfully treat bursitis and Tendonitis/tendinosis. This gives the body time to repair and reproduce the cartilage damage … provided the body is still producing the necessary amounts of collagen.
Update to this blog Dec 5th 2010
I posted this blog on May 5th 2009. Marci is still getting progressively worse. The pain has moved from her hips and knees to every part of her body. Her hands, wrists, fingers, ankles,feet, toes, her shoulders and elbows and now her neck and even her jaw tendons are now inflamed. She cries in pain every night. She wakes up screaming in agony two or three tiimes a night and can no longer climb stairs. She still walks but only wth the aid of a cane or walker. My wife is only 48 years old and she has less mobility than most people I’ve ever seen who are well into thier ninties. Her hands and feet swell every day because of the inflamation and it’s only a matter of time until she won’t be able to walk at all.
I want to thank everyone for all the response and for all the support. All the response is also the reason I decided to update this blog. We get the same old story from the doctors. They claim her disease is so rare that they don’t know what to do to help her. But I have a question. If the disease is so rare, why does this blog get an average of four views per day for the past year and a half, for a total of 2103 views? People find this blog on search engines by typing, “All my tendons hurt” Pain in all tendons. Pain in butt. Tendons hurt. All my tendons hurt and on and on.
If this disease is so rare then how and why are so many people typing “all my tendons hurt” into seach engines every day? I think the disease is much more common than doctors think. So many people have emailed Marci and I over the last year and a half since I posted this blog and say they are having the same problems.
I think there needs to be much more awareness and research done on this problem. It is heartbreaking. Marci has almost zero quality of life because she is always in too much pain to go do anything. She can’t work. She can’t sit through a movie. She can’t walk on the beach or anywhere for that matter. W don’t do anything. We stay home all the time because she hurts too much. She is taking frightening amounts of pain killers. How is this story going to end I don’t know. I know it’s hard. If you read my other blogs you know I also have pain and pain killer issues. I currently take way too many pain pills. I don’t know how this is going to end for Marci or myself. But I do know how dificult has been and it gets worse every day. Some how, some way. we need to get more awareness and research.
Thanks to everyone for all the support. Please keep the emails and comments coming. They have been read and they do help. God bless you all and happy holidays.