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#267581 - 07/08/14 09:42 PM Feeling frustrated w/o a dx
gcampa06 Offline
Registered Visitor

Registered: 07/07/14
Posts: 2
I'm a 24 yr old female I've always had upper back pain but after I had my son my problems have started pilling up. My son was a hard delivery as his head was to lg for my pelvis and he was a vacuum. My dr said he should have been a section and I have now learned that a lot of AS deliveries are c sections. Anyways 3 months after delivery my lower back started aching when I lay flat. I could hardly sleep. I started with a obgyn who found nothing wrong. Then a kidney dr who found I had a kidney stone. After sx for the stone my back pain was the same. I was then sent to a ortho who said I have scheuermanns disease and scoliosis. He said there is nothing to do but PT. I then progressed to pain down into my hips and knees. No pain meds help only a heating pad. I was then sent to a rheumotologist who find my crp was 3.4 and I was Hlab27 pos. although I'm pos he said my symptoms are not significant enough for an exact dx. I was sent home on Mobic which caused a stomach ulcer and I am now on an NSAID oint. I then went and saw another ortho who did an MRI of my lumbar spine which showed minimal degeneration. Not enough for a dx. I have also started having swollen lymph nodes in my arms and have had frequent UTIs. Nobody can figure out the lymph nodes and they think I could possibly have more kidney stones or a complication from a previous kidney stent. I have recently also finished 2 months of PT which hasn't really helped. Walking helps the am pain but can lead to more pain if I overdue it. I'm a nurse and I have recently even had to change jobs due to my health. I also have to use an adjustable bed bc I can only sleep sitting up due to the pain. I can hardly keep up with my son and daily life is struggle. Idk when I became this sick helpless person. I'm only 24!! My family doesn't fully understand and act like I should tuff up but it's hard with a new pain every day! I'm hoping one of you will have a similar story or help me find an ans or just help me not feel so alone in this constant pain.

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#267616 - 07/13/14 10:28 PM Re: Feeling frustrated w/o a dx [Re: gcampa06]
LovelyLaine Offline
Registered Visitor

Registered: 07/04/12
Posts: 98
Loc: Canada
Bless you, it sounds like you are really struggling right now. I can relate to much of your story but can't imagine how hard dealing with all this must be with a child to care for on top of it all. I know it can feel like you are all alone on in this, but trust me, many people here can offer advice and support. I know it's helped me when I've felt isolated and discouraged.

I'm 21 and a currently a university student. I'm not working like you are, but I've had to switch to part-time studies because all the commuting, studying, and sitting through class was causing me too much pain and exhaustion. It used to make me feel like a failure, but ultimately the decision was guided by what was right for my health. I still feel sad about this quite often, but having a chronic illness is a responsibility just like any other that needs to be taken care of.

Being on the cusp of a diagnosis is definitely one of the most frustrating aspects in my life right now. I've been told I have undifferentiated spondyloarthropathy, which for me means that it looks like ankylosing spondylitis from the outside but my MRIs don't show anything helpful. Often times not having enough for a diagnosis means you are labelled with undiff. spond. - it seems like you are in this boat too. This can limit your access to certain medications and prevents you from having the reassurance of knowing exactly what is wrong. Definitely a tough place to be!!

I've been on mobic just like you (and also got stomach side effects). It's too bad that you've had an ulcer while taking an NSAID: these pills can be at least somewhat helpful for many people. There are other medication options out there: if you aren't getting the relief you need please please bring this up with your doctor.

No one in my family understands what it's like either. In fact, sometimes it feels like they are less supportive and knowledgeable about this than a complete stranger would be. One thing that helped a little was bringing home ankylosing spondylitis information pamphlets from the Arthritis Society office and asking my parents to read them. It wasn't a perfect solution but it has helped their understanding some.

How long has this been going on for you? Feel free to message me or post on here as much as you'd like if you want to talk!
_________________________
Liza, 21

Dealing with undifferentiated spondyloarthropathy and taking each day as it comes.

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#267655 - 07/16/14 10:52 PM Re: Feeling frustrated w/o a dx [Re: gcampa06]
gcampa06 Offline
Registered Visitor

Registered: 07/07/14
Posts: 2
Thank you so much for your response it's nice to hear from somebody in my position. I have been dealing with upper back pain since jr high, but this lower back pain just started a yr ago. This last week I have the flu again which is like the fifth time in the last nine months. It makes me wonder if I'm more susceptible to illness related to my back probs. Do you have problems with frequent illness? Also what do you take for pain? Sometimes my Tylenol and ultram isn't enough especially when I have body aches from the flu. I have an upcoming apt with my general and my rheumotologist so hopefully they will have something good to say. Also I totally agree that total strangers are sometimes more sympathetic than family. I have given them info on AS but I think it's hard for the
To process. My husband sees me sick more than healthy so I think he is just becoming desensitized to my issues. So I'm very glad I found this site and reading everyone's forums really helps!!

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#267681 - 07/18/14 08:44 PM Re: Feeling frustrated w/o a dx [Re: gcampa06]
LovelyLaine Offline
Registered Visitor

Registered: 07/04/12
Posts: 98
Loc: Canada
My onset was kind of the opposite of yours: I've had lower back pain for many years but the upper back pain is more recent and currently my major struggling point. Strange how different this disease is for everyone!

I'm always getting sick, but I think that is related to the fact that I take methotrexate (an immunosuppressing drug used to treat arthritis). I find that I tend to flare up when I get sick which really sucks (who wants to feel terrible for two separate reasons anyway?). I hope that you get over this flu quickly and get a break from all these illnesses you are getting.

I have not found a good solution to get my pain under control unfortunately. My main approach has been to:
1) Get my disease under control with medication that acts more long-term (I'm thinking your rheumatologist could help you with this part!)
2) Using heat and/or cold (I think this one is a personal preference... if you're still doing PT they may be able to help you here).

I've heard others on the forum mention taking a short course of steroids which I think helps a lot of people in the middle of a flare. I'm actually bringing this topic up when I next see my rheumatologist because I have never tried it.
_________________________
Liza, 21

Dealing with undifferentiated spondyloarthropathy and taking each day as it comes.

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#268160 - 08/25/14 08:31 PM Re: Feeling frustrated w/o a dx [Re: gcampa06]
kalmarie Offline
Registered Visitor

Registered: 08/22/14
Posts: 3
I understand so much of where youre coming from, my onset was different then yours in that I've been on the cusp of a diagnosis since 2009, it was an onset of right hip pain that has progressed into back, neck and shoulder pain. In June 2011 I delivered my baby, she was a large baby but I was also preeclamptic so even with my temp diagnosis of AS a C-section was a last resort. For me tho I got very lucky and it seems that my pregnancy put my AS into remission for almost two years, within the last year or so the tell tale back and hip pain has begun to return, more intense then before. Its taken for me about 6 years, to be treated as an AS patient, but even then it only happened after I had abnormal degeneration in my neck C3/4 and C4/5. It is so hard to be just 24 have a 3 yr old and like you I work, I'm active duty military, and deal with the pain and along with it the exhaustion of it all. I know exactly where you're coming from, nobody will quite understand what you go thru, youre family may just be in denial and its hard to not be frustrated with that, I was too, I mean its hard for yourself to accept whats going on with you and its personally happening to you! Its hard for anyone not in this to understand, especially because of our ages. I find that Celebrex is what works for me. I spend a lot of time sitting on my couch with a heating pad, or taking showers and baths when I feel I need to. I rarely sleep in my bed, laying in a flat position for too long does not do my body any good at all.
I've been in the constant struggle you are in, having a child that you can barely play with, trying to accept what is happening to you, dealing with a family who cant understand, giving up your job because its too harsh on your body. I cant tell you that its going to get better because you and I both know that it might not. What I can tell you that is the truth, there is a way for you, and you will find it. You will find a way to cope. Your disease does not need to define who you are. I know the worst mistake I made in this awful journey we've all ended up on was letting my disease or before my diagnosis define who I was, the pain began to take over and pollute my mind, i let what i couldn't do overpower what i could do. I let myself believe I was this sick helpless person. But in the end, I'm not. When I stood back took a breath and regrouped things began to improve, yes there is a lot that i cannot do, there is a lot that just hurts more then words can describe, but there are so many things that i can do. so many things that i am good at still. There was a lot i lost but there is plenty i have gained. You know who you are, you know what you are capable of, let your son give you strength on those days you cant find it yourself. The best advice that I can give you as you go forward is to try and keep yourself focused, keep your mind positive. Yes you have a ton going on, you have more pain then most people you know, theres going to be nobody that understands unless theyre going thru it as well. For each thing that has brought you down find in it one thing that you have gained. And lastly and more important then everything else, you my dear, ARE NOT ALONE, there are so many of us out here with you going thru the same. Looking for answers and looking for support.

~~~~Kal

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