Living with Forestier's disease

I don't think there is a number on life expectancy with DISH. It's a matter of quality of life. My mother had it and took a fall at 75 and snapped her neck. I am 64 and was diagnosed at 40 and had a pretty good life till 60 when the pain began to become unbearable. An upcoming surgery should relieve a lot of this nerve pain and numbness in legs and feet. However, if I took a fall at any age now it could snap my spine and for me, a wheelchair and diapers is not a quality of life I would tolerate.

Hope that answeres your question.

THANK YOU FOR YOUR INPUT , IT DOES HELP ALOT.  you are the 2nd person who ive known to say that i has run in their family,  the fact that you had gone through all theses years up until now with out pain is surprising since EVERYTHING, AND EVERYONE IVE READ ON IT HAS BEEN IN ALOT OF PAIN WITH OUT EXCEPTION.  you have my empathy for your struggles and loss.  i have to go but i will finish my thoughts to you later on in the day . TAKE CARE OF YOURSELF. I WISH YOU A PLEASENT DAY.

Glad to help. Yes I do feel lucky that the pain didn't begin till 60 when the bone spurs grew onto some nerves. Before that I was an avid runner/walker/weight lifter and the doctors say that is what made the difference and staved the DISH off for many years. Then the fusion of my entire spine from the neck down because of the disease may have saved me from pain too. Once an area fuses permanently, it's not painful but rather inconvient to be so restricted of movement. It's also hard to keep a good attitude and mood when you have pain and fusion. I suspect there are a lot of suicides due to this disease that we will never know about because it goes un noticed. I wish you the best of luck and as many happy days as possoble with this nasty disease. 

the docs think i got it from long term uses of anti depressents,  its just a corralation , no hard proof.  its not suppose to run in families, but you and some others have had it in their family history.  in mine there has never been a case as far as im aware.  you are very lucky to have made it to 60 with out alot of pain.  it is very restrictive and i hate it.  its very hard some times on top of the emotional problems ive already had way before i got sick.   but it can be worse. i could be paralyzed right now.  have you ever had spine surgery to remove the spurs in the spinal cannal

 

I will be getting spine surgery in September, and will let you know how it goes. I have not had any surgeries on the spine as of yet.

All the knowledgable doctors here in the US say it is most definately hereditary, however lots of people don't know all of their relatives or what diseases they had. The antidepressants would not cause this disease or it would be a very common disease if that were true. JMO

Wow, i didn't know that it effects the whole body i thought only the spine, recently diagnosed with platar facitis...and i too can not walk distance with out a walker or buggy and even then if i walk too much it flares up the lumbar 

i have a theory on that .  i have found many articles on the corralation.  but i believe there is a reason why more people have not come down with it if the corralation exsists.  i believe that geneticly those people are predisposed to the disease.  2,  because this is considered a autoimmune/matabolism disease,  i think meds to a certain  point can disturbed a persons system , but upon that , i believe in my case that the reason for the turn of events is that i was exposed to a retro virus.   a retro virus is a type of virus that has the capability of mutating strands of DNA.  it cant be an easy thing to simply change one cell into another with out multi functions going on at the same time and a retro virus is a capable of helping that process happen.  i was sick with flue symptoms a week before i got the symptoms.  i believe this virus or bacteria infection was the trigger to jump start it.    i know that ankylosing spondylitis is genetic, does run in families and has genetic markers that can specificly be detected . there  are no markers identified for this disease but that doesnt mean its not inherited.   i have a very large family on my dads, and none that ive met have it . infact those who have arthritis are in their 80;s and 90;s  and they have osteoarthritis,  if there is any one in my family that had it they are long dead. my mom and her sister are the only remaining relatives that were blood, all the rest are by marrage

i have facitis,   ITS A ROYAL PAIN IN THE ASS AT TIMES.  i use cruches on long walks,  on short walks im ok, its just my lower back hurts cause takes the brunt of the weight since my upper spine is fused and im leaning forward.  it sucks to have this disease but i know worse off people.   in most cases of forestiers disease the thoracic region is the only place affected causing nothing more than a irritence , they develope it  usually around 60 and its EXTREMELY SLOW.  its not considered a fatal disease.   in my case and others like me where they got it sooo early in life , it is a fatal disease but again its VERY SLOW.  im going on 17 years with it.  i was sick for 10 and didnt even realize it.  if it doesnt hurt , get over it dont see a doctor.  i look back and i know i was wrong. i just thought i wasnt getting enough excersize and getting stiff.

Interesting theory. Makes me wonder if some of my other drugs, such as thyroid meds could be a contributer to the disease.

True enough about many of our relatives are dead and gone with no medical or written records of what they may have suffered from.

I look back at when i first started with pain in my thoracic , 26 yrs ago and didn't start with chiropractor til 2003 after getting whiplash from getting hit from behind...with osteroarthritis and dish , i stay in pain alot and now facitis and diabetes- its like how much can a person take and people don't realize why we look fine but don't do alot of anything because there are repreccussions to trying to do just every day normal things, like house work, you pay for it later when you go to sit down  and relax- more like in bed crying with an ice pack- popping pain pills.

How is is considered fatal? I have never heard that before.

as i understand it though it was only told to me by my doctor and i have not read articles at all though ive tried to find them .  over enough time , the tendons surrounding the ribs and the chest area will calcify , this will lead the person to vulnerability to respiratory infections,  bronchitis, pneumonia, asthma, and other little nasty diseases i dont even know about when it comes to infections of the lungs.  when one comes down with bronchitis, or pneumonia, they generally perscribe anti biotics but the more you use them , the less affective they are over the long run , evenually you get a strain resistance to them and you cercome to the illness.  but forestiers does not affect any organs directly at all,  spondylitis affects any organ , at any time. so we have better odds than they do

i dont experience alot of pain at all yet. just lower back and facitis in feet. so its VERY VERY RARE for me to pop any pills.  i dont even get head aches. not sure why that is,  i have hydrocephalus, you would think i do. but then my parents never got many headaches either so maybe i got some good genes atleast

 

i dont think that any drug on its very own is capable of doing this but because many drugs do seem to work for people and yet the doctors dont quite understand just why it is such as siezure meds that they now treat people with bipolor disorder , manic depressents. and such. i leave my mind open to the possability of it contributing maybe a little in some certain instances.  i myself have experienced side affects from meds the doctors insist im making up cause its simply not suppose to happen.  this disease is a VERY VERY PECULIAR ONE.   its a bilateral disease meaning what happens to one side of the body is likely to occur on the other side of the body at the same time or close to the same time. that leads me to believe that there must be a protien marker of sorts that attatches to cells prior to the immune system attack.  it does not seem random.  infact very systematic,  first the spine, then feet, knees , hips , elbows, hands and leaves the chest for last. extremely weird. so how does it know how to attack what section of the body at the same time so seemingly systematicly.

I really enjoy your posts and views on this. You have done a lot of homework. Thanks so much for all the information. And your right it started with the spine for me then the neck then the feet and now the knees and even in my mouth...equally on both sides. I never even noticed that before. My hips are in great condition though.

Gotta run for dinner now, but would love to stay in touch.

i enjoy our chats.   my dad is a retired doctor,  im not as bright as he is but ive always had a fascination with medicine way before i was even sick.  my dentist told me a couple of months ago i should do jaw excersizes cause my mouth cant open as a much ,  i dont bother doing excersizes cause it never seemed to do anything significant for me. if i start eating out of a straw i expect you to make my puree for me , lmaooooooo   otherwise ill have to sue ya for neglect lolololol.

good morning , hope this finds you well. been up for about an hour and a half.  very hungry have little to eat. maybe ill ransack the neighbors garbage. mmmm left overs.    lol. actually im a othersfood phobic,   for some reason even if the food has never been touched , if its on someone elses place i just cant eat it. why the rest of my family are vultures i just dont understand.  if their is a phrase at dinner that ALWAYS COMES UP , its are you going to eat that??  my response,  have at it just let me close my eyes while you eat it.  have to clean more today. dont want to , have to find something to eat.  have to sleep more. have a good day.

Good morning. Just waking up here. We are actually on day 3 of a 5 day vacation in California visiting my husbands family, so I will be running around all day. We go back home to Arizona by Monday night. I had gotten steroid pressure point shots before the trip and I use Lidocaine patches to keep the pain at bay.

There is a free fun site I've been on for about 8 years that you might enjoy the people. If you are in the UK , you might be amused to see what things we talk about here in US. We talk about everything there, but there is a lot of US politics too.

Have a great day. Eat and sleep well.

Emis Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

i live in rhode island , and arizona is one of my all time favorite places to be though ive only been there 2 times.  I LOVE THE DRY HEAT, HATE THE WINTER , BORN DEC 15TH. 67.   i have tentative plans to go there soon with in a month or two , just out to the middle of nowhere and just camp in a tent , though my dad says im crazy for doing so , but i just want to be in the heat and relax. be in solitude a bit away from people.  maybe if i get out there we could meet for a cup of coffee . i dont drink it im addicted to soda.   I HOPE YOU HAVE A WONDERFUL TIME ON YOUR VACATION .  I WISH YOU A SAFE VACATION , HAPPY DAYS, NICE WEATHER, PLEASENT CONVERSATION AND SCENERY.   p.s  TAKE CARE OF YOURSELF !!!!!!!!,    i wish i could say sorry for being bossy but im really not and id do it again lmaooo. later

only got couple hours of sleep,  was hungry , still have to eat more but playing facebook games. and movie at the same time.  love it when the bad guy gets so p*ssed off when he cant get the girl and takes an uncontrolable kaniption fit. so damn funny.  ill go to bed in a half hour. got to clean the dishes BIG TIME.  can i interupt your vacation to have you come do them for me . it would be a big help .lmao.  hope your having fun and resting well. take care.

hope this finds you well. ( for all intensive purposes) ,  today i didnt do a damn thing but play facebook games.  thats it.  tomorrow busy day looking for car.   ors- oganization of rehabilitation meeting for school money , medical coding is what im studying.  cant wait till tomorrow will be over . not going to be a fun day but atleast productive hopefully . my car died a week or so ago. well. talk to you later.  have a good one

 

Hi again, We fly back to AZ tomorrow, so with rental car returns and all, it will be a long day for me too.

I had a thought today. Do you think this disease could be partially caused by aspertame? All those years of diet soda and other products with that poison in it and they have no idea what damage it does to humans. I'll look into it when I get home.

You have a good one too.

since obesity is some what associated with the risk factors, it could be a consideration but i would think again it would be a combinations of an unhealthy diet of other chemicals in combination with it. alot of chemicals in our foods have been around for decades and if only one certain food was more of the cause im sure it could be isolated in statistic results when narrowing down the possibilities of diet.  our bodies are very similair to the worlds eco system.  its VERY FRAGILE. although it does quite well with addaptations,  once in a while somethings introduced to a section of the eco system that totally throws the whole thing out of wack.  prime ex.   the pythons in florida that are eating everything in sight. are immune system IS VERY VERY COMPLEX WITH (((MANY)))) DIFFERENT TYPES OF CELLS. AND THEY ARE FIGHTING THOUSANDS IF NOT MILLIONS OF ORGANISMS, BACTERIA OR VIRIS.  i just think there is a whole lot of variables that have never been taken into account yet cause we just dont understand how it works.  (the inner workings of a cell are as complex as the galaxy)

well im headed off to bed.  hope your day is a pleasent one and a safe one. night night .

WHEW! Made it home. NEVER fly into Vegas in the summer heat and winds. It's very rough and scary.

Well I have never been obese and neither was my mother, so that's out, and my diet has always been high protein-low carbs with weight lifting and gymnasttics and running/walking....till 3 years ago. I guess it really doesn't matter the why at this point, but just how to best deal with it.

TTYL

yeah,  we will never every know.  i was over weight when i got it.  i weighed 220. now i weigh 205.      took bus to car rental to find out it didnt exsist any more. took another bus to the market and walked a mile down the road to another rental but couldnt get a car cause i had no credit card. then i walked to car dealership.  all and all it looks like ill be able to get a loan from the dealer , ill have to wait till tomorrow to find out.  took a bus to providence then cab to meeting with ors, talked for an hour or so.  walked to mc'd  had lunch,  took bus to providence took another bus home.  then talked to uber about a job and thats on hold till back ground check is done.  mom called 3 times . i egnore her . she is an a**hole sorry to say so ive just stopped talking to her. SHE REALLY REALLY REALLY NEEDS PROFESSIONAL HELP and to have a relationship with out her getting it is on ABSOLUTE 0.  infact you cant even pay me to have a relationship with her.  i missed a library class she paid for me to take at 35$.  i told her id pay her back and i was sorry for missing it.  she told me if i wanted to go home and die it would be alright with her.  the list of mean things goes on so i just stopped talking to her two weeks ago.  she has a pathalogical need to hurt people. and the rest of my family feels the same way about her. my sis doesnt talk to her either.     well. TAKE CARE. IM GLAD YOU GOT HOME SAFE AND SOUND.

I wasn't on speaking terms with my Mother for 10 years before she died. Now my one sister and I stay clear of our other sister who is bi-polar and very dangerous to even deal with. We haven' t been in touch with her since Mom died in 2011. It's best to just stay away from toxic people weather they are family or not.

I hope you get the job and car you want. All that busing around is rough.

Have a good day.

called dealership today.  i didnt get the loan.   so ive stopped looking for a car.   going to see if i can get a mophead instead which was my original plan. maybe a motorcycle  ((((A VERY VERY LIGHT MOTORCYCLE))))).  im in no condition to handle something heavy.  but i figure if i buy a motorcycle i can go to arizona for the winters which was my intended plan for a very very long time.  so i have to see what they have and see when classes start for licenses since i dont have a motorcycle one.  my parole ends in sept.  been on probation for 3 yrs on account of dear loving mother who lied to me and put me smack in a mess i wanted NO PART OF IT AT ALL.  end up threatening to kill this person for nothing.    she put a note on his door (((against a restraining order))))  cops were called they knocked on her door, but she told me it was that guy.  i had warned him once to stay away and i felt i had to do something .  turns out the guy wasnt even home.  i never had a criminal record in my life until my loving narcessistic mother helped me out with that one.  im extremely passive with people i know when im upset. im the total opposite with strangers.  but all and all. im extremely easy going.  dont get angry much with people unless they really are rude then i can be aggressive if i cant walk away from the situation  got to go . take care. have a great day

good morning .  hope this finds you well.   my friend olivia came over yesterday , she helped me clean . there is still a lot to be done but it is livable now, where as before , it wasnt,  it was REALLY BAD before.  then i had a call from someone i hadnt talked to for a very very long time . unfortunately i couldnt talk much as i wanted i was with olivia and i just dont talk on the phone when im with people cause i think its rude.  ill have to call her later.   its a rainy looking day out there but the weather isnt bad.  last night the weather was pretty nice.  i actually slept really well. it wasnt so humid.  i dont have air conditioning. usually cause i like the heat and i have fans , but i let olivia borrow mine cause she didnt have anything at all. and i just couldnt let her live that way.  well. hope you are doing well. take care.

Hi,  I was just told yesterday, so haven't had much medical explanation/exposure.  However my NUCCA chiropractor indicated that diabetes (and a Mayo Clinic article verified diabetes or even pre-diabetes) can be a cultprit as calcification can be the result of an insuln issue--I haven't gotten into the details.  Very quickly poking around online, Isaw a reference to fluorosis,  and I had bad fluoride poisoning when a child.

At the minute have high sugar levels in my blood (for another reason other than diabetes) so am going to get my blood settled down.  I will be interested if this can stay (likely not reverse), further calcification.