Arthrofibrosis Patient Patterns

[stgiles16]

That is wild Teresa, my cat always cuddles my bad knee. I thought it was just me but maybe animals pickup on the heat and pain and are trying to comfort us. Problem is, she tends to bump it when it hurts the most. She ends up just curling up next to it where he back is rubbing against my knee. She never does that with my good knee.

Missy

[Heather M.]

Dogs have a very good sense of injury, and their instinct is to lick it as they have antibiotic components to their saliva.  My beagle had a huge, nasty abcess on her cheek, and my friend's Dalmation parked himself there to lick it constantly.  My dog would even walk up to the Dalmation and turn her head for him to lick it.

EWWWWWW.

My dogs sniff my knee, but I don't let them near it because both are lap dogs and stand on it.  My beagle got me just yesterday by digging her foot into the base of my quad.  Ouch.

Heather

[cat]

How interesting!

cat

[Teresa_S]

You know that dogs are saving patients with epilepsy and heart attacks, as they predict them before they are going to happen. Also, there are the dogs who find cancer in  patients, even when medical exams have been negative.Anybody else out there? Teresa  Like Heather mentioned we do know that dogs lick their wounds and even ours, but this is below the skin. T

[christinaz]

I just saw this thread and read through it and was amazed.  I have numerous allergies:  adhesive, some different antibiotics, a few foods ( but not anaphylaxis), very highly allegic to cats, especially double coated ones, fleas, mosquitoes, pollen mold mildew and many environmental things, also strong odors such as ammonia or bleach will cause an asthma attack sometimes pretty severe.  I always sneeze when I go to wash clothes but never thought about my laundry soap before and also have an asthma attack around cigars.  I have also found that I catch every little flu bug or cold that goes around usually to a severe extent...they seem to last forever.  After I got pregnant with my fourth child ( I had a c-section with my third) I almost miscarried her at 8 weeks pregnant because of the severe scarring in my uterus.  After my last one was born( another c-section) I had a tubal ligation at the same time and have a thick scar that doesn't want to budge and causes sharp pain if I toss and turn in my sleep (almost like a pulling sensation).  I think this is a very interesting subject because I would have never thought that any of this could be connected.

My allegies also started to get much worse in my twenties but seem to have gone haywire after I turned 31.

I am also allergic to many metals

Love, Christina

[starpolisher]

BINGO!!!!!!!!!!!!  Both my son and I have the same type of immune system....lots of allergies....to chemicals, foods, lotions.  In fact autoimmunte diseases run in my family.  I have thyroid problems, mitral valve prolapse, take a benzo for panic disorder.  There is a panic disorder syndrome that Columbia is studying.  I kept wondering if this were not tied in! 

[cudos]

 Arthrofibrosis here as well. Also have itcy nose and sneezing around detergents, newspaper ink, tree pollen, perfumes,

[starpolisher]

Does anyone here with arthrofibrosis have (or have had) the following: thyroid problems, mitral valve prolapse, severe fatigue, aching joints at the same time you have severe fatigue and acetomenaphine or ibuprofin do not help, rashes on your face, sensitivity to high pitched sounds or fluorescent lighting, hand tremor, skin feeling very hot and/or cold, sensitivity to heat and humidity and/or cold (more so than average), bad headaches, interstitial cystitis (painful bladder), GI problems, Irritable Bowel Syndrome, panic attacks and, of course, a lot of allergies and sensitivities to all sorts of innocuous substances)?

Please this is very important!  I am taking part in a study at Columbia University to distinguish types of panic disorder.  There is a type that is really misnamed.....panic attacks are but one of many health problems.  All or some of the above symptoms listed are part of a syndrome whereby the chromosomes have already been identified.  The doctor heading the study is trying to complete a study on this and get the word out to doctors.  While SSRI's are often prescribed for panic it often winds up increasing our symptoms and in fact a benzodiazepene is often more effective.  The doctor at Columbia says we have AHIGHLY REACTIVE CENTRAL NERVOUS SYSTEM.  Her study would help those of us who have this and don't know it....like me, going years thinking I just had a lot of different health issues, when, in fact, it is all tied to one disorder.  I drove my internist crazy running tests which showed nothing (other than my thyroid being off when it was off) and minor blood in urine...but not all these symptoms may have shown up yet or are in remission.  This illness is chronic and does go into remission. 

When I read about the numerous allergies, I was specifically looking to see if anyone here had the disorder I have.  I had a double TKR and have severe scar tissue.  My opthalmologist diagnosed me as she has this disorder.  While more doctors are becoming aware of it, there are many who know nothing about it or are totally unaware.  Perhaps if I had known someone with this dsorder who had this reaction to joint replacement, I would not have had it done or approached it differently.  But now I feel as if I am in a nightmare and realistically know the pain meds are keeping me working but it's just a matter of time before I won't be able to.  It's very painful to walk and get ready and out the door.  I sit at my job so that part is possible. 

I want to write the doctor at Columbia if there are more of you with this problem.  Thanks so much.
Patty

[TIBBAR]

Patty
I had bilateral TKR last Nov. and had a MUA in April. My knees are still stiff and swollen pretty bad. I have an OS appointment for Nov. but I will be calling for a sooner one after I see the neurologist next week. I think there is more artho. in there. Yes, I do have some of those things you asked about.
Severe Fatigue- I slept almost all last weekend and still feel I could sleep 24/7.
Sensitivity to sounds- Yes, I can't  stand a lot of noise especially a lot of different sounds all at once.
Sensitivity to florescent lights- My office at work has 8 (regular bulb lamps-brought in by me)because I can't stand the fluorescent overhead lights.
Sensitivity to cold- My hands swell in the cold. regular gloves don't work I have to wear mittens that keep my fingers together to keep the heat in. I worked many years ago in a nursing home. When I would fill the ice pitchers my hands would swell even using a scoop to fill the ice. Just had a thyroid test again and it came back neg.for problems. Will see NS next week and see what he thinks.
Panic Attacks- Did years ago and just every so often now. I just put them off on hormones now.
Allergies- had juvenile asthma but still get short of breath sooner than most. Seasonal allergies.
Hope this helps!!!              CAROL

[starpolisher]

Dear Carol,
It sounds as if we have had similar problems over the years.  I am exhausted as my son has this disorder and he needs a long rest to get over it.  It does go into remission. I am fast losing my ability to walk.  I am upset because both my son is ill and I am struggling with arthrofibrosis.  I can't seem to find a doctor who cares.  Our psychiatrist is kind but also waiting for this study to be completed.  I was told the study would be done this past May; it still is not.  When I emailed the doctor about arthrofibrosis and seeking a connection with the disorder she said "this is not my area of expertise."  Well that is all well and good, but my surgeon knows nothing about this syndrome either.  I politely asked her who do I tell?  I think when they can't answer a questions they might as well wear a sign that says "don't bother me." 
I have heard good things....positive things about the surgeon I will consult with in one week...Oct. 4.  I can only hope.  I'm very disappointed in the response I received from the doctor.  I did say "if you are heading this research study, I thought you might be interested."  I wonder if she will answer.  Somehow I am skeptical.  Carol, lets stay in touch.  I had a lot of problems with my hands and cold sensitivity too.  In fact I had Reynaud's for a time....take something out of the refrigerator and my hands would turn blue.  Right now I am just terribly angry and disillusioned with doctors.  I will post when my frame of mind is better.  Patty

[starpolisher]

The doctor got back to me (the one heading this study) and said it was something they will file and see if there is a pattern.  They are making great strides in genetics but years away from answers.  Oh boy.

[starpolisher]

I just spoke with my surgeon who had my blood analyzed for any sensitivities to the knee replacement implants.  He told me I showed sensitivity to the cement used in the replacement.  He said he had one patient who also had the same reaction to the implants (scar tissue/arthrofibrosis) and also showed a sensitivity (there is only one lab in the U.S. in Detroit who tests for this).  He replaced the cement with another type and the arthrofibrosis did not return.  He feels that this is an immune response.  He feels there is inflammation there and that for those of us who don't repond well to the implants, it is due to either allergy of the metal or the cement.  This is his approach.  Since so many of us seem to have hair trigger immune systems, I hope this might help someone....or be some sort of an answer.

[starpolisher]

I had one knee replaced (one down and one to go) with another new one with no cement Feb. 7, 2008.  The cement and scar tissue are gone and my range of motion is far better than it ever was with the other knee with the cement. 

My surgeon photographed the procedure and plans on writing an article in an orthopedic journal. 

My one leg feels so much better and it's not quite 2 months since I had the 1st knee implant replaced with this new implant.  I do have very good physical therapy.  He says my knee feels like a knee of a person without arthrofibrosis and I am doing very well.  I am so thrilled......

Deep down there is a part of me that still worries: what if it  comes back?  I need my other knee done.  I was almost totally crippled before he did this last knee.  He is Dr. Edwin Su, at Hospital for Special Surgery in New York.  That hospital is currently rated number one in the country for orthopedics. 

[bella287]

a lot of the symptoms you all are describing sounds a lot like fibromyalgia/chronic fatigue syndrome. i have both and just found out a have arthrofibrosis. I read on this board that people with autoimmune disease which fibro/cfs is are more apt to get the arthro. fibro/cfs is thought to be bought on by severe physical or emotional trauma. fibro/cfs also affects healing. good luck all. also I am going to maybe have a m.u.a. can anyone tell me about this, is it the best way to treat arthro. both my extensin and flexion are really bad. tkr 1-14-08. this was my 4th surgery since 11-07  thanks bella

[cwdrlove]

I will add myself to the allergy list:


Tide (if not dye and allergy free) makes me itch like crazy

Lortab and morphine break me out in hives

After a cruise I developed a sun allergy, now sun with out sun screen will break me out in hives

 And on the other note:

I had my append. out when I was 12, in my mid twenties i found out my tubes had scarred down and had filled with fluid. i had them opened up to only scar down again and I had to have them removed due to risk of tubal pregnancy or rupture.

This all started in my 20's and has become more severe in my 30s, including y skin problems and freak break outs

Also, my grandmother had her thyroid removed and father was on medication for his thyroid as well. Mine has been fine except after I had my daughter.

I find this very interesting, but I doubt a dr would listen to the similarities. They all know more than us, don't you know