Living with Forestier's disease

to my knowlegde nothing can stop the progression but steroids are a treatment that can slow the progression by supressing the immune response and inflammation.  the bad side to this is after 5-7 years or so one risks the steroids start to damage the internal organs.  my suggestion is if you are in the very early stage, you could try it for a few years . but if youve been more advanced stage i myself would never think of taking steroids.    i dont know how hgh would affect it . and im not sure what steroids are used to treat it since that was never an option.   there are mixed review on the cause and even risk factors.  i have no relatives that i know of or have ever had this disease.  im over weight but not diabetic or prediabetic and it doesnt run in my family at all.  i believe its a combination of genetics, enviromental exposure to viral infections, and diet.  its a  REALLY REALLY WEIRD DISEASE

Had pain since January. Physician finally sent me to a Rheumatoligist.

Diagnosed with DISH last month.Pain is mostly when inactive or sleeping. No spinal pain, though I have twice previously had Sciatica.Both times cleared up by Chiropractors. My pain is in both shoulder joints, blades and upper arm muscles. Cramps also in calf and hamstring muscles daily. My physician has put me on one 15mg Mobic anti inflammatory per night for joint pain and one half a 5mg Valium to relax the tightness in the muscles while I sleep. I take one 20mg Nexium daily so the Mobic won`t burn my stomach out. My Chiropractor has suppied me with a Magnesium based DietarySupplement called Ultra Muscleze to help ease the cramps. Rheumatoligist.got me a visit to clinic yesterday and got Cortisone shot in left shoulder.All helps a bit. Keep trying to lose weight. I  think I could lose weight but drink about six mid strength beers a day.That don`t help. Still working, just gotta live with it.   

Its funny how dish is different for everyone some have mild pain and can go on with life others have more severe pain and have to make major life changes. When I first noticed the fatigue and pain the first thing I did was stop drinking my thought was how can I complain about being sick and tired all the time when I drink and what dr would take me seriously when I am hurting myself. I also need to lose weight and quitting drinking helps to do that bigtime. I am lucky enough to live in WA so I just switched to smoking pot it helps with the pain with the bonus of no hangover. 

the only treatment is pain meds,  excersize and steroids which slow the immune system down which i wouldnt recommend over a 5 year period. steroids destroy organs.  i got it when i was 32, its been 17 yrs and it is getting very hard for me. i sympathise with your situation. i cant say that your situation will ever get better since it is progressive but the only advantage is its not spondylosis which attacks the organs as well , our disease doesnt directly attack any organs. if you can call that an up side of things.  there are some surgical treatments to remove bone spurs depending on where they are but i wouldnt recommend that unless its dyer.  unfortunetly the only real advise i can give you is if you intend to have surgery at any time your probably better off doing it at john hopkins in maryland,  its suppose to be the best hospital in the country.

Thanks for the update albeit just to confirm little can be done. Steroids, I'm only too aware, do cause other complications. Since the muscle spasms really took hold some 12 years ago every few months, it was thought that this caused my bodies immune system to go a bit hyper. This, it is assumed, caused Iritis or Uveitis to flare up in one or both eyes. The treatment is steroid drops over several weeks. This treatment, whilst sorting the eye inflammation, also accelerated cataract development in the affected eye. So, it's a vicious circle all round. Fortunately, cataracts can be sorted. In England, one has to wait a long time on our NHS system until it's determined that quality of life is severely affected. Or, you can go private and pay. Get your eyesight back without undue delay! Basically, it sucks all around, but I suppose that I should and do, remain grateful that I've at least got to 59 before I'm in pain daily, and not a much younger person that still has many years of living to enjoy. Let's hope that a cure, or treatment becomes available very soon for those of us who's quality of life has been diminished. Chin up everyone, let's all remain positive.

ive never had treatment for any pain and ive been living with it for 17 years. but i am under the impression from what i know of radiowaves that it should help with some discomfort unless the pain that one is feeling is from nerve pain from within the spinal cannal. radio waves helps blood flow by creating heat , it should help to losen the muscles , reduce inflamation.   but again . ive never had anything like that done so im only thinking it could work not that it will work . but i think that kind of therapy is expensive as well.  i hope this helps a little

Thank you so much!

As a general point of advice/experience I've been taking co- codamol 30/500 for the last 12 months along with ibuprofen and naproxen. Yes, quite an arsenal of drugs to control the pain of Forestiers! Downside is, blood pressure for one, goes sky high, plus weight gain! So, in an attempt to combat both issues I went cold turkey. I'm 6ft 1" and 239lbs, no small guy, I thought no problem! My God, it's horrendous! Never thought of withdrawal symptoms let alone how bad! Results were mega pain in joints, severe muscle spasms, nauseated, diarrhoea, flu like symptoms and my kneck virtually stopped moving! 4 days later, I just buckled and had to use ibuprofen again. Point is, I'm warning everyone that whilst co-codamol is great pain control, it's also severely addictive and withdrawal is not a walk in the park. Ibuprofen however, well as soon as I resumed that In effervescent powder form, it was like throwing the pain switch off! I'm now going to regulate this and see how it goes. Bottom line, with advanced Forestiers, no way can you not have some meds to help with the pain. It's a vicious circle of meds to alleviate pain yet cause other internal damage, or endure crippling pain. I've found that the ibuprofen works best for me but you have to not over do it. Pity we can't pass the discomfort onto the medical profession because doing so would have them find a resolve asap.

I've used this myself for years and recomended it to clients , it works very well for any pain and stress. Buy a plain walkman with head phones, listen as loud as you can, only listen to music, music that you enjoy, but loud. Your mind hears the music, relaxes muscles,nearves etc., and in a way makes your mind stop transmitting pain. It sounds crazy, but it works 100%. Doctor's get paid good money for this treatment, in reality this does the same thing, I've proved it over and over. A walkman cost about 20 bucks, try it, it works, your pain will go away. 

Hey, I'd try anything to ease the pain. I'm a music lover anyway so no problem there! Thanks for your advice and valuable input. I've also found that a freezing cold gell pack wrapped in a cloth, pressed on a spasmed muscle for a few minutes also greatly reduces the spasm! A couple of minutes on, then 7 off, really takes the spasm away after 3 or 4 applications. Great on stiff necks too! Works great for me! Final snippet of information, yesterday, I was at the hospital. Speaking to the senior physio, she told me not to consume large doses of pain meds before sleeping. Instead, take paracetamol at regular intervals throughout the day. 500mg every 5 hours with ibuprofen. You can get both in effervescent powder form which both mixes easy in water so easy to take and, it gets into your system much quicker. Far better than opiates which will cause problems with addiction. Paracetamol is safe if taken in controld doses. As always, take after or with food. Give it a try, I'm finding it works well for me. Good look one and all who suffer from this horrible condition. :-)

Hi

I have tried Radio frequency ablation over 12 times (bi lateral) from T8 to T12. In addition over 30+ steriod injections again bi lateral. On both accounts the benefits are sadly often not long term (1-2 months) as the nerves eventually start to grow back.

I have 2 spinal cord stimulators inserted (1 @ T7 which controls stimulation from approx. T9 down) & (2 @ T2 to stimulate down to T4 to T10 - double dose for chronic area at levels of T8&T9).

Sadly the after 3 years of increasing pain, the only relief I find is to move daily and walk. Up until recently this was near impossible, however I accepted that sadly there is little anyone can do, and for my own mental health I needed to adapt my lifestyle and train by brain to block the pain.

I take like all a multitude of medication as well as natural supplements (Tumeric, magnesium, fish and krill oil as well as multi B complex for men.

I know walk around 6-8 klms daily, hydro therapy, and gentle gym work planned by my treaters.

This may or may not of helped your question, but the biggest change in my life was acceptance. I am 47yo with a loving supportive wife and 2 fantastic daughters. We only get one life and as horrific as it is to live with (personally) I am living it on my terms and embracing the good days and accepting the bad.

All the best everyone, remember today's pain is tomorrow's strength.

Kevin, as a pharmacist, let me say, never go cold turkey. Gradually wean yourself off, and use a precessional to help. I have had several surgeries and never experience withdrawal. I never go too high in dosing, always have addiction avoidance on my mind. I use alternatives like cold packs, physical therapy. and ibuprofen.  

Distraction is a great coping skill for pain.  It works best when the pain is not severe.  I've had Fibromyalgia for 21 years which was triggered by a fall at work.  I wonder if an accident or injury (twisting or jarring) can cause the cascade of Forestier's disease.