Living with Forestier's disease
Posted , 86 users are following.
I have finally found info on Forestier's disease!!
When I was first diagnosed back in 1988 my doctor had no material on this subject. I was told to go home and find it on my computer, which I did. There was a researcher in Canada who hit the nail right on the head, Forestier's is no pick nick! He was so right!
When I was first diagnosed with the disease, I was in a lot of back pain. I had x-rays done and this article is correct....my vertebral area looked as if I were leaking wax. I saw all sorts of bony hooks hanging from each and every vertebrate and I was in a lot of pain; but my doctor at that time said I couldn't be in pain, as it wasn't painful??? On the contrary, the article I was told to research stated that there is a great deal of pain associated with the disease and eventually it would be crippling and that is where I am, 20 years later.
At the first time I was diagnosed, I didn't know that my choking could be associated with the disease itself, I thought it was just asthma...after all \"it isn't that bad.\" I was placed on many anti-inflammatory medications. I was place on one that I suddenly would loose my speech and get confused...I was told they might be TIA's. Later this particular drug was found to do just that. Since it wasn't helping, I was put on another anti-inflammatory and the doctor doubled the recommended dose and later I found that the sphincter muscle to my stomach and been burned away from too much of a good thing.
I was told not to see a chiropractor and for good reason! I had a complication from a surgery and they had to knock me out in order to go down my throat....while under someone turned my head further than I could myself and broke a facet in my neck; now I have plates in my neck and need more surgery....Once my neck was repaired, I didn't choke any longer. Right now, the disease has gotten so bad that I have many areas of stenosis and nerve root cut off. The neurosurgeon who performed my first neck surgery stated that every opening that allows the nerve roots to channel through my body was loaded with razor sharp spurs. This is just the spinal region of my body.
I am beginning to calcify at every ligament insertion site. I have bony over growth in my feet, which interfere with the articulation of my foot joints. I can feel the bones sticking out of my ankles and the tops of my feet; I'm beginning to fuse in my left foot. In three weeks I'm heading for a double knee replacement because my left knee can't support my knee cap; over growth of bone has pushed it away. It is getting more and more difficult to participate in daily activities as my range of motion is becoming limited. My elbows and my shoulders are affected as well...I can feel bony growth there as well. I'm losing feeling in my legs, as my nerves are being pinched; the pain shoots down to my feet and it is gripping. My hands can't grip a phone for any length of time.
I found if my pain can be controlled, I can function well, but too many doctors are not up on the pain this disease produces. Controlling the pain keeps me moving, and that is what you need to do, but the support isn't there for this. The disease is so rare that it is brushed off as regular osteoarthritis and it isn't, it's no where near the same.
I was diagnosed in my thirties and I have lived with chronic pain for over twenty years now. I was told that it affects mostly males over the age of 70....bunk! It is genetic, as my mother had it and wasn't properly diagnosed with the disease and my brother has it as well. My mother and I were deeply affected, she had it her feet as well and by the time she reached 70, she couldn't walk without crying in despair.
I had one doctor treat me with Suboxone and it was the only drug that gave me back the quality of life others enjoyed. He left for the north and I am back in severe pain once again. The problem with this disease, it's a square peg and everyone wants to fit into a round hole. I try to keep a smile on my face for my families sake, but the pain can be read all over my face. I'm still young, by today's standards and I just want to be a participant in this life, not stuck in some corner watching my life and the world go passed me.
12 likes, 213 replies
james22921 Guest
Posted
Good site to share stories on this.
Myself I have just got the diagnosis about a week ago. Being 43 seems a little young for this. However l1 to l3 seem to be the target of Forestier's disease so far. I have had lower back pain for more then ten years. The spike of electric pain is highly painful sometimes. That and for some reason other areas of my body seem to hurt such as inflammatory epididymitis. Which took the doctor a while to find the root cause. With a few gout attacks and what looks like arthritis in left hip it is nice to know the main problem is DISH.
It is hard to sleep and get moving in the morning. I will be looking into pain management, seems this may only get worse as I age.
Thanks for sharing your stories.
james22921
Posted
Up to date information is hard to come by on this. Mostly stories and what surgeries people have. I did read up on magnesium citrate and learned a little about how it would affect some dish patients. Mostly they are forum based. Not abstracts or case studies. Changing my diet is a slow process habits are habits but loosing 10 pounds was not too hard. I have been taking about 200 mg of magnesium citrate. I would have to say I have improvements over the passed month. As such it is noticeable to where I have asked my personal doctor about it but hard to find doctors that understand this stuff. Does anyone have links or papers to see findings on this.
angelat Guest
Posted
I am 56 years old and was told I had Forestier's disease in 2014. I had been experiencing problems with my neck (stiffness, pain, crunching sound). I had an x-ray in office by my primary physician (2013) and was referred to having an MRI. The results of the scan revealed bulging, spurs, and little to no cushioning from the disk; thus, the crunching noise I sensed when turning my neck. During this time I was finding it very difficult to hold my head up without experiencing pain between my shoulder blades and tremendous tension headaches going up the back of my head. I was referred to a NeuroSurgeon who after taking their own MRI scan concluded that I needed fusion surgery of the c3-c4 vertebrae. He then proceeded to tell me that I had Forestier's disease. When I asked what it was he briefly explained that it was a degenerative and debilitating disease that over time would get worse. There was currently no cure, very little info on why or how it happens and to GO RESEARCH IT ONLINE. He then explained that I had plenty of time before it would get that serious. When asked if the surgery was necessary, he stated that I could most definitely wait; however, not suggested because of the deterioration and bulging - risking swallowing, choking and even paralysis.
Needless to say, I did have the c3-vc4 fusion surgery - that was done through the front of my throat very close to my vocal cords (no scarring). No worries, the vocal cords were not nicked. I felt pretty good after the initial recovery. Thought I was on the road to recovery. Had even regained some mobility and the pain and crunching had ceased. Did find that I had to eat a lot slower and chew my food more thoroughly.
Fast forward, almost 4 years later - I am in no pain but have a limited range of motion, my neck seems stiff and tired all the time (as if it can't hold the weight of my head), hardly ever do I get a good night's sleep after purchasing $2000 mattress/boxspring set & $125 pillow, my neck also has a curvature so it always seems like I am leaning forward, I use a cane because I also have stenosis of my lower back causing very little arch and fatigue while standing and walking.
I found what helped me a lot was massage therapy, chiropractic services, and posture therapy, But since I quit my job to become my mom's primary caretaker (dementia illness), I no longer have insurance or extra income for those type of luxuries. That's a whole other story.
Is anyone on disability with this? If so, please let me know how to go about obtaining it.
Thanks.
enrique10009 angelat
Posted
Good evening Angela,
This is one excruciating condition, the best thing to do is to hire a counsel who is well versed in SSDI and take it from there.
Give time to yourself, get also a nice pair of headphones and listen to your favorite music, to me is very soothkng and relieving.
robert54911 Guest
Posted
I have Forester disease for a few years it's mostly affecting mobility in my neck what I'm wondering about is all the pain people say the drugs can not treat. I wonder why the drugs can treat it also I wonder how to find the doctor who might be more helpful. it seems like most of them don't know much about it so I'm not seen any doctor about it but I wonder if I should have regular check-ups with a neurologist. any suggestions? I am 67 and 40 overweight. For can years I have had the joints in my big toe on able to bend so we're rocker Sole for that but lately I've noticed a slight burning sensation in one of my big toes I'm not sure if it's a new shoe I have or if it's something to do with the disease or even maybe just with some toenail as burns when push on toenail. Have any of you suffering chronic pain had it start with a burning sensation in your toes?
nancy_007 Guest
Posted
Hello, wow I was in pain for so many years and now a good radiologist found i have Dish and its in my hands arms lower back neck and nothing takes the pain away. I live in New Mexico right now but was planing to go home to Maine. It is damp there and i was in so much pain there as well my shoulders have to be operated on and then my neck. I know prehistoric animals had this and Finnish ,Japanese. My dad had dupreine stricture in his hands so i think thats where I may have got it from? Why can't you get back on Suboxone again? Im looking for a doctor here that is knowledgeable of this bone disease. I hope to hear back from anyone who can give me some hope. Thank you Nancy
sprout22 Guest
Posted
I have the same condition and have had severe pain with this. I have it in my back but did not know you can get it in your hips and feet. Because lately been having pain in feet and hips with muscle pain also. I am so sorry for your situation and hope you will feel better soon.
jpiszczor Guest
Posted
Just been diagnosed less than two months ago, but doctor said I have had this for decades with the amount of growth there is. Not sure what to expect as part of the treatments. Right now told to lift weights, walk and do yoga (most of this at base of spine). Also receiving steroid injections into the spine.
Any other suggestions on what to try or do? It's so new I don't even have the questions formulated yet.
wsj333 jpiszczor
Posted
I'm so sorry you have this! I would highly suggest you get on Facebook and ask to join the Forestier's/Dish Support Group. It has been TREMENDOUSLY helpful to me and others as we share our experiences, info from doctors, ideas, etc. It's also a good place to vent and share your emotions as you process this diagnosis.
You also want to make sure you have a good Rheumatologist! This can be difficult to find but if you post on the FB support page what area you live in, others can let you know if they know of a good doc in your area.
As I'm sure you were told, there is no cure for DISH, only management of symptoms, which ranges widely depending on docs. Steroid injections should be minimal as steroids deteriorate tissue, which is the last thing you need. You'll find on the FB forum that people have a wide range of symptoms, some with not many, some wheelchair bound.....don't fret about "how you could end up".....this path is different for everyone and some people fare ok with just mild to moderate pain and some limited mobility. It is a progressive disease from what is understood, but I choose to stay focused on today and what my symptoms are and how to manage them right now, not what could happen in the future - that keeps me sane. People are using CBD oil, nerve ablation, yoga, hot tubs, mobility exercises, pain meds, etc all with varying results. Everyone's body is so different, so I think it's a matter of trying things until you find what works.
What has helped me the most is a hot tub.....both in summer and winter. It is so therapeutic because in winter obviously it warms me up and takes away the pain, in summer it cools me down and seems to help with inflammation, and I do exercises in it every day that help with mobility and strength. Yoga, Pilates, Stretching, etc are very helpful. Another thing that is CRITICAL, especially for me, is keeping stress VERY low. Based on conversations with others, we see that when stressed DISH does progress faster. So do what you have to minimize your stress.
Also know that as you process all of this you may need to grieve over this diagnosis. That's ok. Don't avoid it as it causes stress in your body. Cry, scream, rant, rave......it's hard getting a diagnosis that could change your life as you thought it was going to be. Go through the middle of the pain and grief.....you will get to the other side and find a new normal.
Hope you connect on FB......blessings to you!!
Wendy
Jeep_Barbie wsj333
Posted
Thanks for your comments Wendy and you are right about all the above ! I've tried all of them and they all help but the pain has progressively gotten worse over the years and right now which is July of 2019 it has reached an agonizing status . Standing at all has become something I dread . I am on disability for this ( my former career was a beautician) and I cant live on disability so I have have to supplement with a part time minimum wage job that requires me to stand ! They try to accommodate me but it's still agonizing ! Two weeks ago I ordered a mobility chair . I hated to surrender to that but at this point I'm desperate for some relief . I had a lumbar Discogram today which showed degenerative disc disease and hopefully at my next appointment I will be one more step closer to some permanent relief or wheel chair it is ! I mean ... I'm on Tramadol three times a day , muscle relaxers and Diclofenac and a Diclofenac patch and I'm still in unbearable pain ! Like I said though hopefully I'm on the right track and some relief is in sight . I just want all of you to know that this diagnosis is no joke ! it is painful ! Medicine , exercise , hot tubs , massage , CBD oil ... it all helps but none of it took away the pain for me and it is my hope that it will be different for you ! God Bless !
Jeep_Barbie Guest
Posted
oh and I've had the nerve ablation and the epidural ... it did not give me any results .