Hi I'm new to this group. I have been suffering with joint pain and iritis for many years. I am now in my early 50's. I am positive for HLA -B27. I am on naproxen for plantar facilitis. (500mg) per day. I am in constant pain with my middle back area and have problems with tennis elbow and a painful bone spur in my ankle. I feel depressed with my situation . As everyday I'm in pain. Does anyone have suggestions that could help me please?
Hi P., sorry to hear about your situation. In pain for the past decade or so. HLA negative but tell this to my body... Know how you feel. If you are writing in this forum then you were diagnosed with AS, weren't you? So why no diagnosis? The pain is a bad thing to cope with. Did your dr try to put you on AS meds? Naproxen is not enough obviously.. Ask for a second opinion. Painkillers are always a blessing. As bad as you feel try to keep moving - pain decreases after workouts sometimes. Depression does not help too - are you just "sad depressed" or do you have a real problem? Maybe you should see a specialist about this too... Positive experiences are always helpful too hope that you will be put on something that helps. I don't know about the side effects of naproxen, but is it possible that it puts you down? Along with pain it can really put one down and the pain increases. Maybe it's the same here? Consult a neurologist. Good luck finding answers! Hot pillow at the aching area helps, btw. Hot water (bathes). Moderate exercise. I gave up on diary products but not sure that it helps. Sugar increases pain, that I know... That's pretty much. Sorry - have no answers (yet) myself...
Thank you for your reply. I'm hoping for a second opinion soon. To my memory I have seen a couple of rhumetologists in the past and they have said that they can't say 100% that I have AS but the indications are there. I teach P.E. For my living so I am fairly active but need to be more active as I have slowed down over the years. I feel down mostly because I want to play my sport but constantly ache. I have some osteoarthritis in my knees as well. At the moment my thoracic ( middle of my back) constantly aches and I find it hard to get comfortable . Do you know the type of medications that there are out there specifically for AS sufferers? Does diet really help? Can people who suffer from AS still play sport? Sorry to as so many questions but I'm new to the forum and any advice is great fully accepted
Hi again,
>To my memory I have seen a couple of rhumetologists in the past and they have said that they can't say 100% that I have AS but the indications are there.
The usual way to diagnose AS is via CT or MRI if CT does not show anything.
So I am not sure what it means that your drs are not sure – did you did any of these screenings?
They say that even an Xray can indicate AS in some cases…
>Do you know the type of medications that there are out there specifically for AS sufferers?
There are some biological meds which you may receive after failing the more “conventional” (cheaper) treatments.
But I don’t understand why you were never treated as it sounds.
>Does it help?
Depends on your luck I guess.
Painkillers may bring a great immediate relief – try these when you ache.
Some help more than others, so if paracetamol does not do the work, switch to ibuprofen and so on.
>Does diet really help?
I don’t know but I am trying to avoid dairy products and carbs and some other things. Some say that fish oil helps. Not sure, but taking anyway.
>Can people who suffer from AS still play sport?
Yes. It hurts more (a lot). And at some point you cannot play as before. If you are good, no one will notice... It’s better to stay active as much as you can.
Good luck!
Thank you very much for the reply. I have had MRI scans in the past and I do have some degeneration of the spine. I believe that taking the naproxen everyday is helping. But this was prescribed to me for the severe plantar problem. Along with orthotics. I had an X-ray on a swollen heel the other day and I have a bone spur which is causing me lots of pain. I can't remember why I was discharged without medication when the rhumetologist first saw me. I am starting the process again in a couple of weeks with an appointment with a different rhumetologist . Do you have any advice to take with me, questions etc?
thanks for taking time out to reply
Someone said we with A.S. Are prone to develop tendonitis ....have had it in shoulder, elbow, quads and even top of on foot. We have a lot of muscle tightness . Walking and yoga help tremendously. Inversion table helps alleviate pressure on the spine. Have seen a PT for exercises, which I practice regularly. Good luck.
Hi again, it's strange to me that you are mentioning spinal deformation but not a sacrolitic joint deformation. AS was given his name because it usually starts in a sacrolitic (sacroliatic? Not sure about the name) joint and only much later affects the spine... As for your planar spur - I know that it might not work, but try every morning when you wake up to just move your heel up and down stretching it. Worth a try.
I am not sure about your ankle, but maybe it's related to the fact that you can't use your leg right rather than to RA... Shortly? I would ask about your sacrolitic joint. And other joints as well. The fact that you are genom positive still does not mean that you have it. I would ask for blood tests. For RA. For inflammation. For extensive physical examination. Not just the spine. And maybe I would ask for prednisone or other medication for RA/AS... Although I really am not sure about your sympthoms. Maybe its something else - I was told that spinal MRIs are not always conclusive so maybe it's "just" a disk dislocation rather than AS? Did you see an orthopedist?... Sorry that I can't help more. Heels do ache with AS. But at a much later stage as far as I know... Try the exercise for the spur. Good luck!!!
Thanks very much for your reply. I will have a more thorough discussion at my next appointment
cheers
Hi,
These aches and pains you mentioned here are also my experiences, plus more. I am 62, been fully ankylosed, entire spine, neck, and rib cage for many years.It sucks, it hurts, it isnt fair,but we just deal with it. I will write what I do for myself. Every week I visit the Chiropractor. He uses D.N.f.T. That is directional non force technique. I could not tolerate bone popping, not with my spine.I also have Hot baths with Epsom salts, and other times ice packs. I have deep tissue massages when I can afford them.I also take anti inflammatory medicine from my M.D.( Sulindac) when I cant stand the pain any more. I use only enough to help and not for long at a time. Directions say 2x day, and it is 200 mg.30 mins. after anti-inflammatory medicine I take antacid tablets. I also take with food, and full glass of water.I dont take the medicine as prescribed, due to such terrible side effects.
I also have a high tolerance to pain, but that has developed over many years. I am not tough, or macho, but if you read the precautions on nerve pain meds, and anti inflammatory meds, they are worse than the disease.
This has been my procedure for many years, and I am still in pain, muscle, bone, nerve, ligament, etc pains, but I manage to get by. I hope this info. helps you, and anybody else who reads it.
These things i do, but you and others must decide what is best course of treatment for you.
Thank you very much for replying. Sounds awful what you're experiencing. I have just recently had an added problem. I ruptured my right quadriceps tendon and have had a recent operation . It's left me completely inactive for a very long period of time. So stiffening up a fair bit. Really sorry to hear your in a great deal of pain. I have another Mir due in the summer. I will see then if I have anymore deterioration.
cheers
Paul
Hello sir,
Sorry to hear that. I guess this might be the destiny of all of us suffering from AS. I just shocked terribly how much pain you are withstanding. May god give you more endurance to bear that. I too gradually making my self to bear the pain & stiffness. anti-inflammatory meds are undoubltly wors than disease.
Hi Pillsy,
Get well soon. Just don't give up, these are just couple of trivial things which we can overpower easily. we all are with you.. Cheers..
Hi Pillsy,
I"m sorry to hear about your suffering. Please do yourself a favor and find a good rheumatologist and get on a decent anti-inflammatory and/or pain medication. They can help. I have been on hydrocodone for the pain for a few years now and while there is a lot of concern about hydrocodone the fact is that it does help with the pain. Also there are very good biologic medications out there like symponi or remicade which can also help greatly although they are very expensive.
Also, I have made these comments on this forum before so please forgive me for being redundant but I think this is a very important point. AS is really part of a family of inflammatory processes. By definition AS requires some evidence of fusing in X-RAY or MRI. However, the debate has gone on for years about what do you do with someone who has all the symptoms of AS but does not yet show evidence in these imaging studies. They now refer to people in this category as having axial spondyloarthropathy or axial spondyloarthritis or some similar name.but it is AS without the x-ray evidence of fusing. I fit in this category. I am HLA-B27 positive. I have had severe pain in the lumbar spine and SI joints for years. The pain is worst in the morning when I wake up and gets somewhat better as the day goes on. I have a family history of the similar spinal problems (mother and both siblings are severely impaired) and I have related problems with connective tissue in my aorta and aortic valves. But I too was told that I probably had AS but it wasnt 100% sure because of no x-ray evidence. What I found was that you have to find a rheumatologist that has worked considerably with the family of AS symptoms. Otherwise the fact that you don't have x-ray evidence of fusing can throw off even a rheumatologist.
So please; find a GOOD rheumatologist experienced in AS; get on some good medicine and don't be afraid to get good pain meds too. Theres nothing glorious or manly or tough about living in high levels of chronic pain. In a perfect world you would stay away from some of these medications but if you have these symptoms you've long since left that perfect world.
Thank you very much for your reply. Unfortunately my derm appointments have been put back by a few months as I had a freak accident and tore my right quadriceps tendon off of my kneecap. I had an operation and am in a straight legged brace and I am also on crutches. This happened 3 weeks ago. The doctors have said that it could take up to 4 months to walk properly again. Do you think that there could be a weakness in the tendons due to AS? Or is this a totally freak accident?
Hey Pillsy,
Chronic inflammation in the body does have an effect on connective tissue but I've never heard of anything like that. So I would say it's doubtful that there is any connection to AS but that is just my opinion for what its worth. Best wishes in your recovery.
Hi Pillsy,
The use of any and all Biologic medicines usually have side effects, and many times very bad effects, such as ulcers, stomach problems, kidney damage, liver disease, heart problems, and once you have any of these health issues, you have to stop taking the medications entirely, and still have the organ damage. Then what do you do? I take anti inflammatory medicine only whenn I can no longer stand it, and then just enough for the shortest period of time. Pain killers will only produce addiction, and then you will deal with those problems, and still have AS.
Also, ligaments, and tendons can ankylose just like joints.
Not much good news with this disease, AND I sound very negative, but information is essential to making good choices.
Dear Greg, like you, I do not want to take any meds unless necessary. However, my rheum. has me on a regimen of steroidal inflammatory med. and antiobiotic based upon bloodwork (positive for 127 marker) and my description of low back/hip ache. He diagnosed me with having not only AS but also PsA. Wouldn't you know it, but I also broke out with psoriasis about the time of diagnosis of the arthritis. After trying several inflammatory and antiobiotics for 3 months, he said I am in remission for the arthritis. He told me to stay on the meds. My concern is the long term side effects of these meds. I know you are not an MD but would like your opinion. I would like to stop the meds. Even though I take a daily probiotic, I feel the antiobiotic is upsetting the gut flora which in turn is a contributor to my psoriasis. Before meds, my pain level ranged from 1 to 5 (scale 1 to 10) and differed from day to day. I firmly believe in exercising and do daily PT exercises to keep the pain level at a bearable level. i don't have your high pain tolerance and I don't think my arthritis is advanced as yours. I don't know if I will have bone fusion, like you. I don't know if it will advance without taking the meds. Please give me your comments.
I suppose that if your aversion to taking medicines is strong enough then the spartan approach is probably what you have left. Maybe on the particularly tough nights a stiff upper lip and a couple of fingers of bourbon will get you through.
Medicines come with side effects and with all medicines you weigh the pros vs. the cons and make your choice. Greg is correct that doctors must monitor your liver functionality among other things when you are taking the biologics. But the results can be dramatic.
My wife was diagnosed with rheumatoid arthritis years before I ever saw a rheumatologist for my problems. At the time the primary weapon of choice was prednisone which is a miserable drug for long term usage. She was wheel chair bound and had two artificial knees and and artificial shoulder put in. To say that she was miserable was a massive understatement. She was put on remicade about 13 years ago and has remained on that drug ever since. Her RA is essentially in remission and she believes that remicade and the rheumatologist that gave it to her saved her life. She does periodic blood work to monitor liver function but she is happy and as healthy as anyone with a chronic autoimmune disease can be. To this day she would do it again in a heartbeat.
Obviously not everyone gets dramatic results like that. I tried Remicade for my condition and got an allergic reaction to it so no magic. But the point is that if your life is so miserable that there is no joy left in your life then are you going to say that that is better than trying a drug that can work wonders for you?
Go to a reputable running store, explain situation and they'll custom fit gel heel inserts, helps a hell of a lot
Hi Yogee,
Probiotics are great, but would work better, after the anti biotics are finished. All the medicines can have serious side effects, so that is why I have not taken them, except for sulindac when I am hurting really bad. The anti inflammatoy(Sulindac) makes me feel much better, then I stop. This may be 1 or 2 pills, or 3 or 4 over 2 or 3 day period. I just know that these pills can destroy stomach, kidneys, liver, etc. and when that happens, thats it, no more anti inflammatories at all. No type of Nsaid at all, prescribed or over the counter.I use very sparingly, and pray for better days.
Each person must make up their own minds as to what course of treatment they will have. I just have experienced the natural approach mostly for dealing with this AS
My pain tolerance seems to be high, but I have dealt with AS for many many years. It does get old and I get p*ssed off, but there are worse diseases we can have, just pray that doesnt happen.