Hi, After 2 1/2 years of taking my teen to various doctors, he has been diagnosed with AS. I've done much research in that time and agree he probably has AS. However, I have questions that the docs just don't seem to answer so I thought maybe some of you could tell me if his symptoms are characteristic of AS. In addition to the hip and spine pain that comes and goes, he has muscle aches that move around. This week it is chest that hurts - pressure, like someone is sitting on it; another time it'll be his upper arm muscle that aches for weeks, or a thigh muscle. This is pain that keeps him up at night and prevents him from walking. Additionally, he continually has something similar to an arrythmia. You can see and feel a rapid beating of a sort in his chest or in a vessel along side his heart. The cardiologist has run tests and sees nothing wrong with his heart. Even the monitor he wore came up with nothing. But the rapid beating continues. Do these symptoms sound familiar to anyone? Thank you so much.
Yes they sound very familiar to me. I just had a bout of the heaviness in the chest this past week. If you touch the breast bone it hurts. To take a deep breath hurts.
Also the pain in the muscles can be referred pain. Were the pain in really in the joint or ligaments and is causing the muscles to hurt. I have this in my left shoulder. It can cause pain down my arm to almost my elbow. Below is a link to help with more information. Please feel free to ask any question you might have. We have a wealth of information on this board and willing to share it.
Sorry to hear you son has this awful disease. The good new (if you can call it that ) Is that now you know what it is you can treat it and hopefully prevent any damage to his spine and other joints. I wish I had known when I first had symptoms.
Maybe then I could have stopped my neck from fusing. http://www.spondylitis.org/about/complications.aspx
Hello Mom A,
Also, here is an article on Juvenile Spondyloarthritis (Juvenile AS is a part of this disease group): Juvenile Spondyloarthritis
Just to note, we are currently updating our Juvenile Spondyloarthritis section and will be relaunching it shortly.
Wow... Why is it I'm always so amazed at the outpouring of support and free flow of information on this board?!?!
It's soooooo reassuring to know that there are others out here who I identify with!
Mom - I know it's hard to wrap your brain around all the information.. but if your log-on is any indication, you are the best cheerleader your son could ever wish for! Keep up the great work, Mom. Be strong and remember that all your hard work to educate yourself (and maybe even teach the docs a thing or two!) WILL pay off. You have the opportunity to arrest the AS for your son, and some day he will thank you for loving him as much as you do!
All the best,
ONe question, has your son been seen by a BOARD CERTIFIED PEDIATRIC RHEUMATOLOGIST. This is critically important for a correct diagnosis. My son is 16 1/2 and was diagnosed at 12 with spondyloarthropathy and my daughter who is 18 was diagosed at 16 with the same thing. While this is not the same thing as AS, it is similar. If you would like to e-mail me, it is firstname.lastname@example.org.
I have been having pain in my upper right arm for several weeks. I thought it was muscle problem. So this could be refered pain from a joint?
My teenage son (14) was diagnosed almost a year ago. We also searched for over 2 years. His symptoms are sometimes not as clear as other people with spondylitis (he has a lot of stomach trouble). He does have the type of chest pains you describe often, especially toward the end of a flare-up. He also has a lot of aches and pains that move around, in fact until recently his back was the least of his complaints. We are really excited because he has been on sulfasalazine since September and hasn't had a major flare-up since (he was having down and out bouts every few months). It's still early but we're hopeful. Now that you have a diagnosis, I hope your son will improve. Although it's not anything you would choose for him, knowing what it is and how to treat it can be a big help.
Wow, this is great! I feel I'm getting more information here than from the docs, who have basically told me nothing. He was diagnosed because of his x-rays taken a year apart that indicate something is going on in the hip/spine area. I still have questions and doubts and think that possibly something else might be going on in addition to AS. The reason for that thinking is that I don't yet know on the symptoms and side effects of AS. My son's pain varies. He's had two really bad flare's in his hips, where he couldn't walk at all. Luckily, it didn't last more than about 12+ hours before subsiding. His original pain was in, what he described, as his tailbone area. But most of his pain has been in arm muscles, leg muscles, neck and shoulder and chest. He especially has had problems with sneezing. The pain is excrutiating and travels down his arm. This sneeze problem comes and goes, usually lasting about 2 weeks at a time. Does anyone out there experience this? The doctors are puzzled. He's been completely checked out by a cardiologist and his heart is fine. The second puzzling symptom is the rapid pulsating beat in a vessel in his chest. Has anyone experienced this? It doesn't hurt; it's just scarey. We've seen 3 pediatric Rheumatologists. The first said he had no diagnosis and to take tylenol. The second saw him about 4 times and said I really didn't need a diagnosis - just continue to take tylenol. Finally, a doctor at Stanford took another x-ray and diagnosed him with AS and is treating with anti inflamatory, which doesn't seem to help too much. No symptoms this week - that's a good thing. Thank you all for responding, the websites you shared and your support. I'm short on time during the week, but will post whenever possible on weekends. Thanks again.
One thing about antiinflammatories, they take a while to build up to full strength and so you don't see quick results. The other thing about them is not every one works for every person so its a trial and error system to try and find the right one for each individual. Good luck.
I haven't posted in quite some time, but I'm sorry about what your son is facing. My son turned 17 on Sunday and was diagnosed at 15. It's definitely something we work with daily, but it's hard ... I was diagnosed a little over a year ago and feel terribly responsible for what Ryan's facing. This is going to be lengthy ... sorry ... Ryan had a paratonsilar and pharangeal abcess (filled with hymophillis) when he was 3 ... he almost died. At 12, he was diagnosed with disseminated histoplasmosis; in July 2003, he was diagnosed with AS; in October he was hospitalized with aceptic meningitis ... the neurologist who stepped in during his hospitalization wanted to do a recheck last week ... he's the first doctor who has said let's step back and look at this collectively ... he thinks they're all related and is sending Ryan to an Immunologist in St. Louis on February 1 ... I'm scared. He feels that Ryan could have a very rough road ahead of him considering his past ... I'm scared. I sit hear with tears in my eyes ... I'm so sorry for all of you who have children dealing with health issues. Ryan has never asked why ... he's tough, but between us moms, I'm just not sure where to turn. Lots and lots of prayers ... to "Mom Advocate" ... if your son would like to contact Ryan, just e-mail me; I'll pass on his email address. The kids need to be able to connect. Thanks for listening, I just had to get this out there to see what anyone else might think ... God bless you all ...
This message board is good for me too. It helps to share concerns with people who understand the struggles and overwhelming feelings of being a parent of a child in pain. My story sounds so similar to many of yours. Mom Advocate--we too got dismissed from first a gastro-enterologist (sp?), and then a supposedly highly respected pediatric rheumatologist. We finally found an adult rheumatologist who was willing to see our son (she was recommended by a friend--what a blessing!). Even she was a little unsure that all his symptoms could be spondylitis. An MRI confirmed what she described as "classic AS". Alex started on ibuprofen which did little. As I mentioned earlier since sulfasalazine, he has not had a flair. I'd be happy to e-mail if you have more you want to ask or talk email@example.com
Ryan's mom--My husband's cousin has a daughter who was diagnosed with a serious liver disease, then IBD and finally AS (after finding out about our son). They now say it is all probably related. Your son (and you) have been through some horrible stuff--I hope putting the pieces together will get your son on the path to being healthy. My prayers are with you.
Sorry about your sons diagnosis.
Keep that young man as active as you can. Execise I found to be the best defender from AS.
I was diagnosed with AS about 2 1/2 months ago. I'm 31, I look back and I know I,ve had it from about the time I was 19.
My symtoms started with sciatic nerve pain then acute upper back pain to constant lower back pain and stiffness, constant dull pain all over. If I got bumped to hard my muscles in my side would cramp and it fealt like my bones were ready to break.
and now its my left hip. starting in my left knee.
I have had that same with preesure in my chest.
It feels like its my heart. Its like I get pressure right over my heart and Im unable to take a deep breath. Its not painful until I try to breathe deep. It almost always last about a minute. This has probly happend to me 50 times in the last 10 years. I too have had some test done because I was freeked out from it. The docs were unable to find anything. My opinion is the issue Im getting in my chest is my rib and muscle in that spot. Its an isolated spot about the side of a thumb. I think it may be cramping in that spot just like i get cramping in my side ribbs, my back. Acute cramping unlike cramping in your side when you run. I tend to get these cramps right before I get a flare up.
I can say once I started taking 20 mg of bextra a day, 95 percent of my AS symtoms are gone. Ive been on it for about 4 months.
A friend recently told me about how he once had heart pulpitations.FAst slow stop fast He said he suffered from that on a regular basis. His docs found nothing wrong with his heart. He said he talked to a dietrician and was told his body lacked potasium and that was the cause. He said he now takes potasium supplements daily and no longer has heart pulpitations. He said he stopped taking the potasium at one time to see if that was really the cause of them ceasing and they came back very quickly. So he went back on the potsasium and the pulpitations once again left.
blessings to you and your son.
Hello: I just wanted to say that I wish you all the very best in all categories. In auto-immune diseases, the inflammation can be such at times that it causes inflammation body wide, including blood vessels. This can leave behind calcified granulomas that show up on x-ray. These are remnants of old inflammation 'pockets' and are or can be quite common with inflammatory diseases. Your son will most likely pass this stage of rapid heart beats, but no one can say for sure because so many people respond differently. Just hang in there and know you'll always find support here. Have a great weekend and i'm glad you are finally on the right path for treating your child's illness. Best wishes, Della
KatiKat - the pain in your muscle is probably the muscle. I get horrible muscle spasms, cramps and contractions - and pain.
A Mom - Sorry about your son's diagnosis. As someone else mentioned, inflammation affects everything - including smooth muscle. I tried increasing potassium in my diet and taking potassium supplements and it helped a little bit. Right now I'm adding vitamin D to my supplements because I'm low (a blood test is needed because too much Vit D is a bad thing, too.)
Ask the doctors if they've done a lupus panel. It's a HUGE blood test - many vials of blood. The reason I ask is because my mom had blood clots. One of her earliest symptoms was what felt like a rapid, irregular or skipped heartbeat. Doctors hooked her up to a monitor and could find nothing wrong with her heart. Turns out a blood clot in the lungs can feel like an arrythmia. A lupus panel can reveal (1) more information on the AS since lupus, Crohns disease and spondylitis are related diseases and (2) a genetic factor that increases the risk of developing blood clots (I'm positive for that genetic factor).
For those interested (you may have seen my post) - we've overhauled our Juvenile Spondylitis section and it contains a ton of new information: JSpA Main Page
Areas covered include: JSpA Symptoms JSpA Diagnosis JSpA Treatment JSpA Medication
About that sneezing ... my chronic post-nasal drip gets much worse when my inflammation gets bad.
Thank you all for responding. What a wealth of information you have given me. Now I must study each issue you all have shared and then assimilate it with what I already have and know about my son. I'll try to respond to each one of you. We will try the potassium to see if that helps the fast beating in his chest. This disease is so confusing, because for the past week he has been pretty much pain free. He's gone as long as 6 weeks without pain. Actually, the pain is really an ache - aches in what he describes as his muscles. That's why I didn't think it was presenting like AS. The docs didn't explain about referred pain/ache. The sneezing I referred to was just a normal sneeze. But the pain AFTER he sneezes is excrutiating - radiating through his chest and usually down his arm. The pain lasts at least 10 minutes each time. This pain comes and goes. He'll be able to sneeze for a month or two and then it'll be back and he just dreads sneezing. Does anyone experience such a thing? Can anyone describe a "typical" flare? I've never had it explained so I don't know if Taylor's episodes with bad aches is a "flare". Thanks.
Hi, Mom: Sorry to hear about your son's diagnosis. As others here have stated, though, it's good to know what you're dealing with so that you can take a proactive approach. Often I take comfort knowing I'm doing my best to fight this stuff.
I've had problems with sneezing myself, and that usually happens when I have inflammation in my spine. I would bet that it wouldn't just have to be the spine but probably costochondritis (sp?) also (I think you can find more info. about this on this website). I have heard of other people describe this pain, also. I didn't have problems with it for a long time, but when I finally did during a particularly bad flare, I had already read people's description of it so it didn't worry me as much. The breaks in between would almost seem to confirm this. Best to ask and check it out, though, just to be safe. For me, it seemed to be something in the forceful jarring of the sneeze that aggravated things and caused the additional pain.
I wish I had more to offer you than just my prayers and best wishes. I'm so glad that your son has you in his corner.
I am going to address one thing here that you seem very concerned about that didn't seem to have been answered as of yet.
You son's rapid throbbing heartbeat that he and others can see and he probably feels. It is called tacchycardia. It is nothing to worry about other than he has a fast pulse. I suffer from this, and have AS and Hodgkin's Lymphoma. I underwent a nuclear radiogram of my heart, called an RVG recently, and although my pulse is somewhere in the high 110's or even 120's at times, the radiogram showed my doctors that I have a very, very strong heart.
One other thing that can bring about a rapid heartbeat, but I am not sure this is so much true with AS patients but I do know is common in cancer patients, is sometimes Anemia can cause a sudden change in blood pressure. This can bring about "night sweats", and this is followed by the heart pumping harder and faster to move the blood and stopping the sweats and chills. Regular blood counts will be able to tell you and your son if he is anemic.
So far, my son is not anemic. The rapid pulse seems to be evident in a vessel to or from the heart. You can see it rapidly pulsating. I can't tell if it is heart arrythmia or rather a weakness in a vessel wall. That is what concerns me. Regarding the sneezing, you've reaffirmed that this is an effect of AS. It is the jarring of the sneeze that causes the radiating pain. I just hadn't heard of that and no one had mentioned it before. Now, can anyone explain or describe a flare? My son has many good days and sometimes weeks, then the ache will return in a new place. Is that a flare? Also, many of you say an early diagnosis is good because you can treat and fight the disease. Do you mean that you can treat with drugs and exercise? So many questions are being answered. Thanks. I probably would have spent days, months, and years trying to diagnose a second disease of the muscles. Now I'm beginning to understand his aches and pains are symptoms of AS. Lastly, I don't think he has had a Lupus workup. Someone mentioned that. I'll research this more. Mom Advocate
Hi again, Mom Advocate, You are getting bombarded with information!! I am sure you are both thrilled and overwhelmed! One piece of advice that has been helpful to me is...this disease manifests in MANY different ways. Yes, lots of things are related, but the most important thing you and your son need to do is make him feel better. Information is power, but much of it is beyond your control. I took a break from all this reading after a while because I just had too much to process. Take your time to absorb it all--don't feel like you have to do it all overnight. A year later, things look much better for Alex than they seemed a year ago. I do thank everyone here though, because the support is one of the most helpful things of all. I hope I don't sound ungrateful or unsupportive...I just remember those early days being overwhelming. Take your time!
Mom Advocate: My son has had problems since he was learning to walk (he is 12) but was only diagnosed a couple of years ago. Recently he has had two separate episodes of something similar to what you have described. He felt like his heart was beating fast and hard. It bothered him so much that he wouldn't go to school or play. After the second episode the doctor did an EKG and it showed "sinus arrythmia". The doc said it was nothing to be concerned about, that a lot of young athletes had this problem. I am still concerned and he is by far a "young athlete". Prior to having these episodes he has had where he said his chest hurt and was "heavy". He also has unexplained aches and pains. We just deal with it the best we can and take it day by day. I have mentioned this before but our biggest problem is his teachers who can't understand that he can be great one day and not able to go to school the next. Hang in there, you're not alone!
Regards to sneezing.
I too have had tremendis pain while sneezing. Because my AS was inflamed, wich for me was in my spine, I dreaded sneezing. but like you mentioned, this was not always. but always when my spine was inflamed with my AS.
When I feel a sneeze coming on, I brace myself, whether I'm in the midst of a flare up or not. I usually lean forward, and hang on to the counter, table or back of a chair. Better than that, though, is to squat down, curving my spine as much as I can before it happens. Sometimes, they come on so fast, though, that I don't have the time to brace myself for it, and the pain is so bad it literally brings my legs out from under me! It's like someone stabs me in the lower back and then runs the knife down my legs! Talk about painful!
It's funny, even some of the things that seem like 'little irritations' when I am going through them seem to be validated as real through this board... It just reinforces the belief that I'm not alone!
Yep, Colleen what you described, me too.
braceing mysself bending over and preferably hang on to something because this next sneeze might drop me to the floor.
Yep, for a long time I thought I was very much unique.
Hmmm. Finally, others with a similar symptom as my son - sneezing and then experiencing horrendous pain. His pain is in his chest - like every fiber of his soul is exploding throughout his chest and sometimes down his arms. Does any one else experience that? Some have mentioned pain in the back and legs after sneezing. But Taylor doesn't have that. But he experiences about 3 minutes of debilitating pain that he thinks he won't be able to take. It's scarey.
Hi Mom Advocate!
You are VERY lucky...I say that because you have discovered your son's AS early. By the time I was finally diagnosed, my pelvis was fused all the way up through my lower 5 vertebrae as well as some between my ribs...
AS attacks the cartilidge between your ribs just as it does your discs in the back so that might explain some of the inflammation in your son's chest.
I only have one piece of advice. Look into ENBREL or any other TNF blocker. While anti-inflamatories will relive your sons pain, they will not stop the progressiosn of the disease. Even with exercise, and anti-inflammatories, he will still eventually end up fused:( After years of athletics and a ton of ibuprofen, it still did not stop the inevitable for me.
Enbrel will slow down or stop the progression of the disease. I am on it now and feel incredible but I will never be able to unfuse my body. Fortunately you have the opportunity to keep his disease from progressing and buy him some flexibility.
Those are my thoughts anyway. Good Luck!!!!
hi all im new to this site.would love to pick your brains and lives to all the problems Im having and see if its posible the doc is wrong in saying he dosent think I have AS..thanks logcabin
hey, i stumbled across this posting recently after having extreme shooting pain in my arms after sneezing... I also saw some people saying they have night sweats (which i do, sometimes literally puddles around my chest) and i also experience heart palpatations and I am also very tired when I wake in the morning... I am 24 now and I have experienced these symptoms for 8 or 9 years... I played football and baseball through high school and college and I work out 5 times a week... I also recently had an ekg, blood work and a general physical which came out normal...
Reading your board has throwin up a few red flags for me... Should I be concerned or could I have just something as simple as a pinched nerve??
Thanks for your time!
This is probably going to sound like a crazy idea, its more in the line of preventative, and I don't know if it will help, but here goes...
A few months back I got an Alexander Technique videotape at the library and they went over the proper way to form the body when sneezing. Now, I know sneezes can be random, but maybe it would help to try it... at least prevent some pain...if you can remember to do it before a sneeze.
The tape had lessons on it by Deborah Caplan.
I remember well the rapid heart beat problems and yes, it is a very worrying symptom. I really thought I would not be living very long
However, in getting rid of the AS by avoiding starch and taking a lot of mineral pills, I solved the problem.
I tend to see the palpitations [in fact I think it was worse than that] as mineral deficiencies. Now, do not ask me which one because there are several mineral or vitamin deficiencies that tend to produce heart irregularities.
Mineral deficiency is part of the AS picture because of the damage that AS does to the cartilage and the damage done by inflammatory products. I believe that some of us get into more strife too because we have had mild mineral deficiencies to start off with. It is not something which Doctors seem to be trained in....- to be fair the signs are somewhat subtle.
The other consequence is that if we start to be liberal with the drugs we then find some minerals/vits are depleated even further.
I hope that your son gets to try avoiding starch first to see if it is the AS reaction [he will lose all the pain if so] and to supplement with minerals [a general plus trace mix] to see if the heart troubles go. Neither is very drastic, but simple to do, and the best way to start both diagnosis and treatment.
Since my pal, North seems reluctant to offer a disclaimer, I will do it for him.
North is NOT a doctor and the advice he offers is merely his opinion, and not to be taken as fact.
North's ideas on mineral deficiency should not be used as a substitute for actual authentic medical advice from a real doctor or legitimate medical professional.
North, why can't you be more like John and post a disclaimer?
I thought maybe the 'disclaimer' was in making it quite clear that it was personal experience upon my part.
I find it unusual to make appologies for something that is everyday stuff of ordinary common sense and not suggestions of using particular drugs which really do have serious side effects.[something which happens here frequently] I have never once suggested any drug, but have assumed a little intelligence on the part of the viewer as well. Was that a mistake?
Do we have to add a disclaimer in case someone ate food as well? If so what did you have in mind Also what is the nature of a disclaimer? - for the remote possibilty one might actually become well? thereby cheating all those producers of drugs out of there 'earnings' when we do not need them?
Sorry Spenser, should I make it "only an ordinary sage"
Maybe you could call yourself, "Salvia officinalis", which is the herb from which Sage is obtained.
Yes, I think anytime you suggest that someone should take your word over professional medical opinions or legitimate therapies, you should include a disclaimer, no matter what level of intelligence you assume others may or may not have. It's not food that is the issue, it is your advice, which suggests food and vitamins as a replacement for sound medical treatment, that is in need of a disclaimer in my opinion.
Have a nice day, O' Sage of New Zealand.
Sorry, Salvia officinalis of New Zealand.
It's not food that is the issue, it is your advice, which suggests food and vitamins as a replacement for sound medical treatment, that is in need of a..........
Please note, Spenser, I do not advocate food and vitamins as a replacement for "sound medical treatment".
One should correct any deficiencies and diet difficulties so that one has less need for extra med. treatment.
In fact ones diet and minerals/vitamins are part of sound medical treatment anyway. In the case of AS and Fibromyalgia it is a crutial part of it - as already discussed.
My comment about a persons intelligence has to do with their common sense and ability to research their medical needs and discuss these in a combined effort with their Doctor.
It seems to me that so many people are abandoning their personal responsibility to themselves and expecting Doctors to be God-like figures who are going to cure anything and every thing with only magical sounding drugs, when they should be looking out for themselves better in the first place.
It is often a patients desire to have some big sounding drug or painkiller NOW, that causes a Dr to cave in and miss out on the preliminary "green prescription" they should be trying first.
A lot of the AS, cases really need not have got much further than a frank discussion with their GP about various possibilities and options for treatment of their cartilage problems.
Except thats the perfect world, where Drs actually know about the mineral defs. of FMS or the klebsiella reaction in AS.
There is a light at the end of the tunnel - I notice that more Drs here are beginning to suggest to patients things like "look on the net. You might find out more there"
That's good to know, North. Your previous post did not seem to indicate that. I'm glad we have an area of agreement.
Oh the dreaded sneeze! OUCH! It is not only very painful but can be very dangerous if your driving a car because it can totally lock your body up. I had this happen to me many times to the point to where I was afraid to drive because of it. That was in my early stages of AS around 20 or so lasted for some time when ever I was in a bad flare. My heart goes out to your son let it be known more and more is being learned about the disease everyday. Hopefully new meds and treatments can help your son with the battle of this disease. Terry