Spondyloarthropathy & Fibro... questions/support/symptoms, etc.
Good morning all! I am new here. 25 yr old/female. I have been reading up for a lil while, but finally decided to join. I guess I feel like a hypochondriac sometimes with all the things I have been noticing and when I tell people about things, I find myself downplaying some of them so that people don't think I'm crazy... Im frustrated and nervous/scared... So, I have been having back pain for long time, worse after having child in 2008, then persisted slightly worse after car accident in 2009 and developed tendonitis in hip that won't stay gone, then while on anti-inflammatory for that, developed pain in my knee. All the while, I had pain in back while laying in bed at night, woke me up in morning and very painful, would go away during day, etc. The knee thing startled me because i was on meds for almost 6 months when i noticed it, so doc decided to do some tests, and that's when things finally spurred off into the rheumatology direction... First exam I was told likely spondyloarthropathy (main issue) and definitely fibromyalgia (background condition). Since then (January), I have had weird skin rashes that went away, strange skin patches on/in ear that peeled off, lips are weirdly chapped seemingly bumpy/thick, constant headaches, xrays found sclerosis in SI joint and mild arthritis in lumbar spine, bowel issues I am realizing may be related/seems like IBS and is only occasional, and now I find some weird bump/nodes in my side/back neck (2 of them) one kind of soft like a blood vessel and one kind of hard deeper underneath/between muscle (REALLY worried bout these)... I feel like I am going crazy, and my husband thinks I keep thinking up things that aren't really wrong... BTW, ANA Titer tested 2x (first 1:40 speckled, 2 weeks later, dual at 1:320 speckled and 1:80 homogeneous), no HLA-B27, RF-, no lupus, scleroderma, etc. Advice or thoughts anyone?? I have a doc appt tomorrow with rheumy and thinking of telling him about ear and neck bumps, but not sure what to do...
Sorry so long, and thanks to all who feel like replying!
The following user gives a hug of support to TX_VJ: hairspray (03-14-2011)
Re: Spondyloarthropathy&Fibro.... questions / support / symptoms, etc.
Definitely tell your doc about the rashes you have.....could be the beginning of psoriasis....a common cause of spondyloarthropathies in women.
I was misdiagnosed with a sponyloarthropathy because of SI joint arthritis until they got MRI's and that showed osteoarthritis from having a couple of big babies, both posterior births and one of them took 40 hours of labor. But I do have both OA and rheumatoid arthritis of my spine. If you have researched the "spondylo's" then you know that they can affect you all over the place. But being HLA-B27 negative, means it's more likely that you have a psoriatic form and they have to watch for that because you can start the rash after the arthritis.
The good news is, they can now treat it. And they have some good treatments for all forms of the spondylo's and even a possible cure for Reactive arthritis(ReA...formerly Reiter's Syndrome). So if you have to have something, this is a good time to get one of these as they are coming up with new treatments left, right and center.
Let me know what the rheumy says. It can take time to figure out what is what so don't get upset if he/she doesn't have definitive answers. These disorders can take years to figure out as they are diagnosed more by observation than tests.
gentle hugs........Jenny(OA , RA, secondary Sjogrens and possible secondary gout)
The Following User Says Thank You to jennybyc For This Useful Post: TX_VJ (03-03-2011)
Re: Spondyloarthropathy&Fibro.... questions / support / symptoms, etc.
Thank you for your response! I have my doctor appointment in just a few hours and will repost any updates. I will be sure to tell him about everything. Strangely, another bump popped up on the back of my head, and it looks like they might be lymph nodes... not sure though. Kind of nervous, but trying to stay calm... I'm sorry you had to go through so much labor! I had a c-section, only 1 baby at 6 lbs, 2 oz. I don't really exercise alot, but am always on the go. My doc said no real reason why I should be having so many issues. Again though, I will let you know what I find out.
Re: Spondyloarthropathy&Fibro.... questions / support / symptoms, etc.
my daughter who is in late forties has been recently diagnosed with the anklyosing type of arthritis and has similar problems but not all the bumps etc. She has difficulty waking up when the weather changes and has terrible pain with stiff joints. She has to do ultrasound work so has a tough time for many days. I can't help you now but to say I do understand your dispair. I hope you have had some sucess since you first posted.
Re: Spondyloarthropathy&Fibro.... questions / support / symptoms, etc.
Well, I finally have an update. Not what I was expecting, but nonetheless... I went back to rheumy and he looked over all of my tests, etc. and said that I am not HLA-B27 positive so he is not comfortable making any diagnosis now and that the arthritis and other things were not significant enough... He wanted to take a "wait and see" approach. The doc did notice there was now not only bursitis in my knee, but it had fluid in it (when it didn't before) and I had developed tendonitis there as well. No explanation. He said he didn't want to drain it and that we will check back again in a few months to see if I still need the pain medications!!! (What?! When I stopped them earlier this year, the pain was horrible!) I told him I was confused because when I looked up spondyloarthropathy after he initially mentioned it, that everything matched and made sense. He agreed, but said "you are not positive for HLA-B27, and I will not make that diagnosis. You have Fibromyalgia and I don't know why you are having all of the pains, except that you have Fibromyalgia." He then proceeded to tell me to cut back on vigorous exercising (which I don't at all), and said that "even if you had HLA-B27 and I diagnosed you with spondyloarthropathy, the treatment would be the same, so there is really no difference."
I am confused. One other update... right after this, I got really sick with bronchitis, then with lung lining inflammation. I got put on a month long routine of inhalers and a step-down Prednisone (steroid) schedule. Since I have been on the Prednisone, I have had no more pain in the knee, hip or back like before (unless I forget to take the NSAID in the mix of other meds) and the pain all seems to be totally under control. Is that normal? Did anyone else get relief from a steroid? Is it something I should tell my doc? I am to be ending the Prednisone this week. I guess then I will find out if the pain comes back after stopping the Prednisone and will know for sure if that was the cause of the pain ceasing... Ugh! Sorry so long!
The following user gives a hug of support to TX_VJ: hairspray (03-29-2011)
The Following User Says Thank You to TX_VJ For This Useful Post: hairspray (03-29-2011)
Re: Spondyloarthropathy & Fibro... questions/support/symptoms, etc.
Hi,
This is my first post to this site. I was searching the internet for spondyloarthopathy and saw your post and felt I needed to respond.
I'm in a very similar boat to yours in many ways - did not test positive for the HLA-B27 gene but have a long medical history of problems stretching over 20 years now. I've had 2 hip surgeries (minimally invasive - not replacement), two back surgeries (incl. fusion), and probably over 100 injections over the years (mainly steroid injections in the back, neck, hip, and TMJ joints). I won't go into all the other stuff here, but stomach problems and small "sores" on my skin (espcially around painful areas such as my hip) are other things I've dealt with over the years.
I know what it's like to have an illness that really hasn't been "firmly diagnosed" by doctors and that is very difficult to explain to your loved ones and the people you work with. This can as difficult to deal with as the disease itself sometimes.
If there's one thing I've learned over the years, it's important to be firm with your doctors. If they aren't helping you, you need to find someone who is more willing to help with diagnosis and symptom treatment. For me, steroids definitely can help temporarily. Injections can be less risky, healthwise, than oral steroids. You may find over time that it is one effective tool to deal with some of your issues.
Pain management is a must and I would look into seeing a pain management doctor (if you haven't already) as well as a rheumatologist. Some of these folks are able to give injections and work with you more effectively on pain medications. Lyrica may help if you aren't already on this (?)
Hope this is perhaps a little helpful - just be assured you are not alone out there! It also took some time for my wife to understand that I wasn't simply a hypochondriac and I had a real disorder, even if the doctors were giving me a fuzzy diagnosis. Sorry for the long post!
Re: Spondyloarthropathy & Fibro... questions/support/symptoms, etc.
Hello,
Hmm, several of your symptoms are alot like mine. I do have Lupus and Osteoarthritis of the spine, hips, and ankle, but I feel like something else is going on as well. I have spinal OA in both my neck and low back. Low back started first, then worked it's way up my spine over a couple years. I also have sacroilitis, which is inflammation of the sacral joints. There are times that areas of my spine feel so painful.... the best way I can describe is it feels inflamed and throbs. Sometimes my sacral area feels like a huge, deep bruise...like I was kicked by a horse several times or hit by a baseball in that area. Same happens on and off in other parts of my spine. This happens to me in flares...it'll stay around a few weeks or so, then go away. Mind you, I still have pain, arthritic pain, but this other thing feels different and it's on top of the other arthritic pain and stiffness.
Just a few years ago, I developed rashes around both elbows (right first, then later on the left). It was thick and scaly, but I didnt see a doc about it at first. After about a year, it just went away on it's own. Then I got rashes on my legs...they were small red patches, about nickel size or so, but not perfectly round. Just red and they didn't itch. When the redness went away, it appeared as if I had a bruise in the area. I did see a derm for it, she said it was probably eczema, gave me steroid cream, and eventually it faded away. But now I have a different rash on both shins that looks similar to what I had around my elbows. It does itch sometimes. It's thick and scaly and red. (Oops I forgot, at some point, I also had this around my ankles). I recently saw a new Rheum, got tons of tests done. I am also negative for the HLA gene. When I showed my rheum my leg rashes, she said it looked like psoriasis to her, but she couldn't be positive. Now I have to go the dermatologist again....<sigh>. My lupus is currently okay, though, my ANA was positive at 1:320 also.
Strange thing you mentioned was some lumps on your neck??? Hmm, I've had this lump on the back of my neck, left side, between the ear and nape area, just below my hairline. It's firm, not large, and feels like it might be on my muscle. Now I've had this thing for many years. I went to a doc many years ago for something else, can't remember what, and the nurse was checking my glands, etc, and she felt that lump and told me i should have it checked out. I didnt know it was there beforehand. Well, back then I had no insurance, no money, blah blah, never had it checked out. In '04 or '05 at my then Rheum, I told him about it, he felt around...and actually laughed at me, said there was nothing there.
My sister gets all sorts of lumps all over, including her neck, but she has sarcoidosis, which is what's causing her lumps. Bad for her, though, she's constantly getting biopsies just to make sure it's not cancer.
As for my lupus flares and back/neck pains, the only thing that REALLY Helps me A LOT is steroids. I've taken courses of oral prednisone for lupus flares, i've taken medrol dose packs for my back and I've had many, many spine injections (ESI's) which are epidural steroid injections. They inject the steroids right into the epidural space of the spine. Even when I just get the ESI's, it makes my entire body feel better. Even my fingernails! My nails get so healthy and grow like mad - no more splitting, breaking, etc. However, when the steroids are done, I get walloped....I get hit by a freight train.
This can as difficult to deal with as the disease itself sometimes.
