How many with joint problems?

[bvdr]

I'm really interested on how many people here with valve disease also have significant joint problems as well, particularily a connection between rheumatoid arthritis and rheumatic heart disease.

I've had stiff achy joints and muscles since I was a teenager. I was diagnosed years ago with rheumatoid arthritis but never actually had the lab criteria to back it up. It was made after I had surgery for tarsal tunnel problems in an ankle. The orthopedic surgeon said it was "a rheumatic ankle". I've also had disc surgery and the neuro-surgeon said the adjoining discs were not in good shape either. I hear so often about shoulder pain following valve surgery. How many had a lot of shoulder pain prior to surgery as well?

Those of you with Rheumatic Heart Disease- have you had an unusally high amount of other type of surgeries? I'm really curious about this because I believe that somehow this is all connected to an auto-immune response of some sort.

Betty(bvdr)

 

[Nancy]

Hi Betty--

I think you are asking important questions. I have been looking for links from rheumatic fever to other diseases (in addition to valve problems), as well, since Joe had rheumatic fever as a teenager.

He has significant regular arthritis in his knees. He also has some markers for inflammation of an unspecified nature. He has significant lung problems, including lung fibrosis and pulmonary hypertension, and or course, he has a double valve replacement and congestive heart failure.

He has had some peculiar things happen to him, such as a severe serum sickness reaction which put him in the ICU for about 10 days, and included excruciating joint pain and stiffness to the point of immobility of all the joints in his hands and legs. I questioned every doctor about a possible link with rheumatic fever and they did not feel there was one. I was very fearful that what I was witnessing was a rebirth of rheumatic fever, but I guess it wasn't the case. It was very peculiar and some doctors had never seem a case of it, and others hadn't seen one in 17 years.

I have continued to ask about any connection with rheumatic fever and rheumatoid arthritis, and each time I ask the question, I am corrected and am told that although they sound similar, they are not the same disease.

Joe also developed an extremely high temperature (106.7) which again landed him in the ICU for a long stay. The cause was never found. There were only educated guesses. I think that is because they absolutely had to get him on antibiotics pronto to keep him from getting any infection in his heart valves. The Infectious Disease specialist was hopeful that he got enough cultures before the antibiotics, but nothing showed up in the cultures.

He has had several of these puzzling and strange things happen to him. I sure wish there was a main cause or smoking gun, and believe me, his doctors have looked and looked and looked. They are all puzzled.

In my mind, I always go back to that RF, and the fact that he had it before penicillin was in common usage, so didn't get the best of care. He spent a year in the hospital.

 

[LUVMyBirman]

Hi Betty,

I recently posted some general informaiton about autoimmune disorders. RA falls into that catagory.

With autoimmunity, connective tissue is involved. Our heart valves are just that. So, in a nutshell there is a definate link there. Here is a site with a ton of info.

All the best to you.
www.aarda.org

 

[bvdr]

Nancy, I tend to agree with you. There has to be a some direct connection. I've had some pretty wierd things too but nothing compared to Joe. I'm going to research this some more and I'll let you know if I come up with anything interesting.

Gina, reading your post and also a personal message that I just received was one of the reasons I started this thread. The site you mentioned is a good one and thank you for posting it.

Betty(bvdr)

 

[Tom Harrison]

Prior to being diagnosed with a valve problem I was sick for months. Joint pain was one symptoms and after the murmer was diagnosed the doctor said a leaking valve can be missed because the symptoms often mimic other illnessess and one in particular is rhumatoid arthritis.
Post surgery I have had ongoing problems with my arms and in particular my shoulders. People at the gym say it is similar to a rotator cuff injury. I have been doing exercises to strenghen the shoulder.

 

[Jean]

I have had noticibly less joint problems since surgery 3 years ago. But I had a bicuspid valve that just wore out and no other underlying problems that I know of. My allergies have since abated drastically also. So I'm not sure those with congenital defects necessitating the surgery act like those with systemic problems.

 

[Mark Wagner]

Wow! You 'all' may have really hit on something here. 3 weeks ago I took my what I think, is the 6th ambulance ride since my surgery. This time to a major hospital in Seattle. They have run every kind of test imaginable, and poked so many hole in me, my wife has me drink a glass of water, then has me walk around the flower bed to water her roses! I have gone into horrible muscles spasms, and my joints and bones constantly ache. This started actually before my heart surgery (the joint and bone pain.) I tell you 'all' with no exageration, I live in constant pain, and the only way I can control it is with VIOX, and I take nuerontin for the muscle spasms. The muscle contractions last around 20 minutes, and I can only just lay on the floor in agony. The pain is so bad, the fireman could not touch my skin or I came unglued. They have run every kind of test, and nothing??? Well their is something, ... a $300.oo ambulance bill on my kitchen table. 6 times now in the hopital for this, which I always fear is my heart, next time I am just going to suck it up and stay home.

 

[bvdr]

Mark,

Aspirin works for me as Vioxx works for you. Tell me more about the episodes you have had.

Betty(bvdr)

 

[Nancy]

Hi Mark-

Please do not ever just suck it up and stay home. You and your doctors don't know what this is, and to stay home where you cannot have emergency care if you need it could be disastrous.

Keep safe, Mark, even though going to the ER is a pain. Sooner or later, you will have a diagnosis.

 

[LUVMyBirman]

Mark, see if you can have them do a blood work up on you. Testing your SED rate. If inflamation is present that will promt them to look futher for the direct cause.

As I mentioned on a few other threads. Try a search on Autoimmune disorders. There are many of them that can cause such symptoms. "RA" Rheumatoid arthritis is one of the most common. Some of such can attack your vitial organs and connective tissue. Exaclty what are heart valves are made of.

Knowing from experience (I have RA) it is a definate option that may have caused my valve disorder. Or something in the Autoimmune family. You can have more than one disease at once! When I say Autoimmune people think HIV. It is nothing of the sort. To put it in laymens terms Lupus and Marfans are both autoimmune and very genetic.

Take care and keep us posted.

 

[Tom F.]

I believe that based upon my experiences, and what I have seen with others, there is some link between cardiovascular disease and arthritis. Five years ago I developed osteoarthritis in the hips, at age 45. In December 2002 I had a repair of an ascending aortic aneurysm. I have a close friend who had bad knee arthritis for years, then at 51 suffered a stroke. Another friend had a toe joint rebuilt, then an aortic aneurysm several years later. I know of several other examples as well. I do not think that one causes the other, but both may be caused by the same underlying condition perhaps. There is a wealth of arthritis related information on the web at a site run by one "Dr. Stoll", a retired MD who is into sound alternaive medicine. For those suffering from arthritis you should know that several people who had posted messages on the site claimed to have cured their arthritis, including in two instances RA, utilizing a program that includes strick dietary modification. If you search the site, or ever the web, for information about "Robert McFerran" you will find one person that has reversed their RA, and has written extensively about the protocol he followed. If anyone wants more info about this aspect feel free to E mail me at "[email protected]".

 

[Aunt Granny]

Uncle Arther

Uncle Arther

Now that I am reading about this, it reminds me that just recently I have been diagnosed with O.A. recently. I did not EVEN think it might be related to my heart. But I think it showed up around the time I started showing symtoms. I really think yall are on to something. Thanks! I am going to ask my doctor the next time I am in.

 

[Susan BAV]

WOW!!! This is absolutely fascinating to me! I have been having the strangest joint troubles (pains) lately, which have been steadily escalating, and I never really connected it to my bicuspid valve decline! Now, most of my pain has been down my right side; has anyone else seen that to be their case? I am especially inspired to read that some of you have found relief following valve replacement surgery! WOW, again!!! I am so glad I found this web site! Thanks!

 

[hensylee]

Mark, are you taking any statins? I was on Lipitor and one day the entire body was in a cramp. I went off Lipitor, with my dr's blessings because the numbers were down. Stayed off a few months, but next cholesterol test showed they were back up so I went back on Lipitor. That was about 2 yrs ago and I am having no problems.

My cardio's nurse practitioner says it's sometimes good to take a medicine vacation for a short time, in case you or anyone want to look into stopping it for awhile - if you are using a statin. Just get your dr's blessin.

 

[Birky]

Joint pain

Joint pain

Betty, Glad this all wasn't my imagine with my joints. I have had 2 knee surgeries and have had trouble with my shoulders for years.Shoulder has gotten worse since the surgery. I think I have had more surgeries than most and now am having problems with the good knee. This deters me from doing a lot of exercise which I need to be doing. Before the surgery I was taking Vioxx but this thins the blood so it would really goof up the Coumadin which is still not regulated. Been 5 mos. and still not staying level. Still on a 2 week schedule for blood testing. I also have a question - did anyone have stomach problems after the surgery. I am having heartburn and an upset stomach most of the time. Seems that something doesn't go down right. I will discuss this with Dr. on my next appointment. Thanks,

 

[ccrawford]

Betty - I have pretty bad shoulder joints, but I think its due to pole vaulting in high school and marathon kayak racing later in life. When I get up in the morning, it's pretty bad, but about midway into my pre-breakfast walk everything starts to loosen up and the day starts to look brighter. The statins can indeed cause some muscle cramping. Chris

 

[ericaj]

my experience

my experience

Being that I am only 20 I feel sorta too young to be posting on this particular message but i thought i'd share my experience. About a year ago I had 2 carpal tunnel surgeries done for severe problems related to CT that caused numbness,tingling, major muscle loss in my thumb and other things. My drs. tried and tried to find a connecti9n between this, other slight abnormalities and the heart valve problems - none was ever really pinpointed. but to this day my drs. still ponder this connection, especialy considering my age. . I seen 2 rheumatlogists, 2 neurologists, a ped. neurologist, ped. cardiologist, hand specialist, orhopedic doc, genetic doc and others. Such is a coinsidence that this is similar to what you guys are talking about. well takecare all, someday maybe we'll know all the great mysteries of this world, Erica

 

[Georgia]

Hey, Marcia

Hey, Marcia

Are you on famotidine (pepcid)? My docs have had me on since surgery. Apparently this surgery and all the meds cause GERD in us folks, and this doc wants to protect the gut, because if it gets bad the bleeding is awful with the coumdadin. If you're not (and maybe even if you are) you need to talk to the doc or pa cause you sure don't want to mess with this.

 

[Birky]

pepcid

pepcid

Called the Pharmacy and got a refill on the Pepcid. It seems to help. Thanks,

 

[Sherry]

This is an interesting thread as I have suffered severe pain since two years ago (four years after my surgery). I have stabbing/ripping pains in my ribcage from front to back very frequently. My docs have done every conceivable test to look for the obvious culprits, but can't find anything. He suggested intercostal nerve inflammation, and I've just resigned myself to living with it. Gina, I'm going to check out that link to autoimmune diseases. Since I had rheumatic fever, as many valve patients have, that makes a lot of sense. Thanks for the info.

Have a great weekend all of you