Hello. I am new here. Seems i fall into the seronegative spondyloarthropathy category. I have tons of pain, and inflammation that can be seen on MRIs such as bone marrow oedema, effusison, and tendonitis, though there are no visible signs of redness, swelling, etc...
In addition to the pain,. i have incessant clicking and snapping, and i am not hypermobile. the snapping accompanied the pain, they both came simultaneously. i also experience fasciculations regularly. My doctors all agree that these are not "typical" crepitus type sounds.
the only thing to which i have responded so far is prednisone. 40 mgs took so much pain away, but now that i am off the rped, the pain is back full force. So my rheumy is trying me on azulf...i know it can take months tos tart working. i am on week 6.
I was an active person all my life...ran religiously, 20 miles a week since age 20. I am now 34. Nothing triggered this that i know of. all blood work is normal. pain is everywhere, began in spine and now all of insertion points of tendons to bone hurt. even walking is painful.
I am just wondering if anyone has had luck with azulfidine and if anyone else is in the vague category of spndyloarthropathy that i am in.
thank you for reading this.
ali
Thanks for your reply cathy. I am glad to hear you are getting better! How old are you/ The problem is, myblood work is all negative, so it is difficutl to knwo what to treat me with,a nd also, we are trying to conceive.
I have had about 20 opinions! LOL They all say they have never seen this before. I have systemic tendonitis and no one knows why...sed rate, ANA, RA all normal.
What meds are you on?
I am 37. My bloodwork was all normal as well-major pain started in feet/calves/achilles (I could not stand for more than 2 minutes and it was like EXTREME plantar fascitis) and in my lower back (SI joints in particular) hips, hands, ribs and eventually was all over my body, especially at sites of tendon attachments, as you mentioned. I'm surprised your Rheumy was not familiar w/the attachment sites showing "thickening", especially noting that your MRI shows those sites. That is called ensopathy (I think I spelled that right)! It's common with certain types of arthritis-it's almost a "fusing" at the site of tendon attachment, I had the same at the site of my achilles tendon attachment. Anyhow-I had to do a lot of research and go thru quite a few meds. prior to finding a combination that works for me. I went thru Indocin and diflucan (both anti-infammatories), pregnisone, and finally had success with an antinflamm. called Etodolac-also known as Lodine. Initially I took the 300 mg. Etodolac 3x per day, and I now take between 1-2 per day-dependent upon my pain. I also take Darvon 2-4 x per day. I started with Vicadin to ease the pain so I could stay active, but after a few months it made me aggitated. The Darvon is good-lets me continue working and caring for my 3 yr. old all day. I also take an antiseizure med. at night called Keppra. My rheumy tells me it interrupts the electrical activity of the brain and muscles; thus, I go to sleep and have less pain. SLEEP is super important-as soon as I had the pain under control and I was sleeping-I felt so much better. I am also on Prozac-pain can cause major disruptions of your brain chemistry and anti-depressant meds can help w/the depression most have w/chronic pain. I used (and still use) a great Physical Therapist, Chiropractor and Manipulative Osteopath, along with my Rheumy locally and at Johns Hopkins in Baltimore MD. Initially-it was lots of treatment, now (almost 3 years later) I may visit the PT for a few sessions 3 x per year, and the chiropractor 1-5 x per year. Osteo. treatments 5-8 x per year. I have "flair ups" usually do to too much activity or things I shouldn't do anymore-I had to be really proactive with all my doctors-it has not been easy. I was constantly on the computer researching symptoms, etc.... The diagnosis I received was Ankylosing Spondylitis-which causes problems such as the ensopathy as the tendon sites. You might want to do some research and speak with your doctor regarding that disease-there is a genetic marker test that can also be done when determining the diagnosis. Ankylosing Spon. is thought to be a "man's disease" but is, in fact, commonly misdiagnosed in women (just like heart disease was until recently) . Remember-there are over 100 rheumatic diseases-you will eventually find a combination that works for you. Don't give up. I would love to help in any way-I was desperate when I became ill-I had a newborn son and I could not take care of him! I was a top 10 national Fitness Competitor-and suddenly I was bedridden. Now I strength train, work, care for baby, but I still cannot handle lots of impact (such as running or teaching aerobics/step). Can't wear heels-but that's the small stuff! I just re-read your original message-regarding the med you are trying, just a shame it takes so long to help-I found the Etodolac helped within one week. Please try to find out what is going on before trying to get pregnant-pregnancy is tough and imagine how hard it would be to take care of a baby if you feel the same way as now once the baby is born. We had to hire FULL TIME in home help for one year at 00 per month - I don't know what would have happened if we had not had the means to do that. I am serious about helping in any way; again, Johns Hopkins was fantastic. Oh-the fasciculations-are they true "mini-spasms" painless but irritating; or is it more that restless leg syndrome-more at night with a creepy, crawly sensation that makes you have to move your legs or you will go crazy? I did not have any of the clicking sound you describe.
cathy
Edition to last posting-the med was not Diflucan (totally different thing!) the other anti-inflamm. besides the others I noted-the name was Dicloflenac or something sounding like that!
cathy
Hi again-I just did a quick search regarding azulfidine. It is used for many type of arthritis, as I'm sure you know. You might as well give it the full 12 weeks-but that stinks! Are you taking anything else for the pain such as codeine, darvon or other?
My rheumy was up front w/me that treating spondylitis is a gamble. The paths of inflammation are so complex-there are over 30 anti-inflamm. meds that can be used and it just depends which one interrups your cycle of pain. It's not exact science and different docs like different meds. It appears he is treating you aggresively-not messing around with Bextra or something too bland for your pain. Are you able to exercise at all? When I first became ill, I would drag myself to the pool and swim a little - I started using meditation/chakra balancing tapes to have some type of "control" over my healing. I made sure my diet was extra clean (complex, nutrient dense carbs and protein with every meal), and still take a good multivitamin/mineral supplement and probiotics. But, no additional herbs/essential fatty acids...that can all interfere with the meds. your doctor is using. I just feel so bad for you-I truly know what you are going thru and it's a nightmare. Hang in there! By the way-I do have a graduate degree in Health Sciences-which helps me filter thru a lot of the crap that's out there-so hopefully some of my journey will be of use to you.
cathy
Cathy
Oh Cathy thank you soooooo much for your response.
I feel like there is some out there who actually understands!!!!!
I think i will print it out and bring it to my rheuny when i see her in december. I wonder if i have what you ahve? I have been tested for Ankylosing but i do not have the genetic marker. I am wondering how long it took for your entire progression, from the feet to all over? This all began for me 18 months ago. I feel mine is definitely spreading. No doubt. It started just in my back and shoulder and is now everywhere. I do exercise despite the pain, whatever i can do, that is. I no longer run, but i walk a couple of miles a few times a week or do the elitpical or swim. It always results in more pain that remains, but i do it anyway, as i do nto want to completly lose my level of fitness. All of the muscles in my legs that i acquired from yaers of running are now flabby, and i have onlys topped running 9 months ago!
The thing with the getting pregnant is, i am 34 years old, and being that this keeps getting worse, i would liek to concieve now rather than later. Say i do find the right medicine..i will have to go off it for the entire length of the pregnancy, ya know? Also, i can take azulfidine during pregnancy if it does work. I also hear you go into remission often with this type of thing and preganancy. I am not counting on it, but perhaps it will happen. If i wait to find something that worse, i could be 60 by that time! Well, that is my reasoning anyway.
I would love to talk to you. I dont' know if you would feel comfortable doing that. Thanks again so much for your reply!
Alison
Oh Also...do you have swelling in your joints? I don't. Mine is all tendon-related, and muscle. At least for now!!!! I also wanted to answer about the meds, i am taking tramadol (ultram) daily now, for the past 4 days since it got dramatically worse in my thighs last tuesday. I do nto seem to need meds to help with sleep although alst year this time i did and was taking flexeril. I also take cymbalta to deal with that secondary depression. I have no side effects from it whatsover. I am thinkign of tyring a pulse pack of 20 mgs of pred for 5 days to see if it clears any of this up. OK bye!I tested negative for the genetic marker also-and I have no swelling whatsoever. I understand that some of these conditions can go into remission w/pregnancy, but be ready for the possibility of a severe flair up after the baby is born-but you never know. I would never go thru the awful time after my son's birth, but I'm still glad to have him. I don't know what I would have done if things had not subsided-but if you are determined to get pregnant, then you might as well go for it. Then you can never regret not trying.
As far as the progression-I started having pain in my lower back and calves/feet at about 4 months of pregnancy. It continued to get worse during the pregnancy, but mainly in back, traps, feet and calves. After my son was born-it quickly (within 3 months) spread all over. As soon as I was put on the right meds-areas such as my hands, elbows, neck, ribs and hips got much better. However-I struggled ( and still do) with feet/calves/low back. I would say I am 80 % normal now, but it goes down to much less when I have a flair up - which is about every 3 months and lasts about 1 week. My fingernails would even feel inflammed-and they would show signs (redness and color changes). My thumb nails have never recovered-they are covered in bumps and ridges, and the ridges will get deep at the cuticle edge with each flair up-and grow out as an indentation. My doctors really don't know what to say-but the vet for my cats tells me he says major changes in horse's feet when they become ill or under a lot of stress.
As far as exercise-I found that I had to(and still have to) be very careful with anything repetitive and/or unilateral. Walking seemed to place a lot of stress on my hips and sacral area. I still keep long periods of walking to a minimum. Until just a few months ago-I could not strength train at all with my lower body and would be in severe pain if I did anything that involved different planes such as lunges ( in place). I found there were some basic physical therapy exercises I could do on the ground that were not placing a lot of stress on my lower back/hips. Even now-if I get crazy and decide to do something I shouldn't (especially running/jumping) I will be out of commission for a few days. I think it's really important to note that it took me almost 3 years after getting on the right meds to start walking/strength training at a very low level. So-you are still in a relatively "acute" phase and anything you do may exacerbate your pain. When I was in the pool for the 3 months after the baby was born -I couldn't even walk on the pool floor (with water at chest level) because it would cause too much pain. I know exactly what you are saying about your legs-they atrophy so fast! I just started (about 2 months ago) really light leg routines - you will be surprised how quickly your legs will gain muscle again, once the time is right for you to train again. I miss running-but it's just too much. I know that for me-running was such a stress reliever-I still have not found anything quite as good.
I live in York, Pennsylvania-you are welcome to call me any evening after 9:00 pm. There has to be an answer eventually-it's hard to be patient! My mobile number is 717-578-9766 and my home phone is 717-764-0475. I am going to dig out some newletters from an organization I joined, it's for those w/spondylitis/AS, etc...It's really informative/inspirational. I will give you the internet site when I find my copy.Take care.