Spondylitis Association of America Forums General Discussion Young Adults - The 20-Something Club trying so hard to stay positive

This isn't my first post, I was diagnosed with spondyloarthropathy and fibromyalgia in either November or December honestly time just blurs together. I was working for my grandfather for 5 months before he fired me March because I was unable to work my 3 days a week. I have a beautiful 5 year old daughter and an amazing fiance who tries so hard tp understand what I'm going through.

Things seems to get better, but only for a few days at most. It takes everything I have most days just to stay awake right now. My muscle spasms get so severe some people have thought I was having a seizure. My daughters father doesn't believe I should be taking care of her 'if' I am so bad off so I feel I am put in the position where she has to sit by am watch me suffer and suffer most days in return. I live with family so I get a great deal of help I just feel that maybe...I don't know. I'm incredibly depressed I'm confused and scared, the pain and everything else doesn't seem to be getting any better after all this time.

Brittany, I'm so sorry things are so bad right now, and that your daughter's father is making noises about your ability to care for your child. Talk about adding insult to injury. I'm also sorry that your daughter is watching you suffer.

Is the bipolar disorder well controlled right now with your current treatment? It's very common to experience depression with conditions that cause chronic pain anyway, but I would guess via my exposure to the bipolar disorder that runs strongly in my family (and so far seems to have missed me), that chronic pain alongside bipolar must be a difficult combination.

Do you think any of your FMS or SpA treatments are working? It's normal to still have flares, but have you seen any overall improvement? I see that you're on prednisone. Is that a long term plan right now? My understanding is that it can affect one's mood in a pretty big way. I actually kind of thought it was contraindicated for bipolar disorder, but maybe not. Sometimes you gotta do what you gotta do.

Are you open to trying anti-TNFs? They don't work for everyone, but for many, they're absolutely life changing medications. Their safety profile is in many ways safer than that of prednisone.

All of those comments aside, I'm depressed right now as well. I generally rock a pretty "Polly Anna" attitude, but I'm struggling to do so lately. I really don't doubt that we'll find me an effective treatment again, but I'm getting very frustrated with the waiting game. As my husband and one of my doctors have recently reminded me, modern medicine is amazing, and there are exciting new things coming down the line all the time. When we're the ones in the trenches with this disease and feeling low about it, that's only comforting to a certain degree.

Since you were just diagnosed 4 or 5 months ago, I'm sure you still have many available treatment options to try. It's frustrating that most of them take a while to wait and see if they'll work (azulfidine being one of them, as I'm sure you know), but something will be more effective for you than it sounds like things currently are. We're all different, so different meds work for each of us differently. Either you haven't landed on the right mix of meds & lifestyle, or your meds haven't kicked in properly yet. When I was on it, I was told azulfidine can take 6 months to work. Just be aware that per studies, azulfidine/sulfasalazine (also referred to as SSZ) hasn't shown effectiveness on axial spondylitis symptoms - that is, the spine and SI joints. It's quite likely it will help with peripheral symptoms if you experience them (hands, fingers, hips, toes, knees, etc), and I hope it does.

Hi there! Thank you so much for your response! It has certainly been difficult taking on all the additional stress of the outside world when im still trying to fight the stress that's going on inside of my own body.
My bipolar is under control, ive had is controlled fairly well since i was about 18 years old. The lithium takes care of most of it, and since i started on the cymbalta for the fibro pain it has helped an awful lot with the depression as well.
I just updated my medication list, i was only on the prednisone to wean myself off of it and had been off of it for about a month, i just went to my rheumy Friday and she put me on a steroid pack to see if i had any improvemnts because she isnt sure if the majority of my pain is coming from the fibro or the spondyl at this point. I am more than open to trying any type of medication at this point, she told me that if i start to see improvement with the steroid then she would take me off of the azulfidine which im thinking is what is going to need done, i think methotrexate is going to be the next one they try me on. And possibly increase my Lyrica im currently on 150mg at night and im not sure how high i can go on it but it has seemed to help more than the neurontin. I just hate feeling like all i can do is wait and wait.
Im sorry to hear that you're experiencing some issues with depression right now as well. Im so used to bouncing between my two happy and not so happy times for the past few months that its just become a routine for me. You're absolutely right though, knowing that there are so many different things out there and so many options available can make all of it easier to get through.

Lyrica has been great for my FMS. If you're only up to 150 mg, a dose increase might help. I take 300 mg (150 mg twice daily). I first started seeing benefits at 200 mg, and an even greater effect at 300 mg. I was very resistant to the fibro diagnosis for several reasons, but an effective treatment convinced me finally. I saw a pamphlet at my pain specialist's office the other day that said it can be prescribed up to 400mg, or it may have been 450mg. I hope that all of your medication adjustments work out well, and quickly!

I was just prescribed an antidepressant, Pristiq, last week. I plan to start it tomorrow. We'll see how it goes. I'm not thrilled at all about adding yet another med, but I'm willing to try it for a bit. I'm also seeing a counselor this week.

Fingers crossed that things turn around for us both soon.

I hope that you have seen some improvement since you last posted! I definitely understand your hesitation with adding another medication!

I just started my first injection of Humira yesterday, i was supposed to start 2 weeks ago but i got sick and kept putting off my TB test, i wasnt really thrilled with the possible side effects and all of the risks involved with it. But i finally took the leap and did it. I got sick yesterday evening and just felt really blah! But when i woke up this morning that feeling was gone.

As for everything else, im back in physical therapy and most days im able to get around and just do my normal routine. I kicked my fiance out due to the terrible amount of stress he started causing and everything else started falling back into place.

Im still nervous about the Humira, but i have a lot of goals set for myself that im hoping to be able to reach, and i have a good feeling deep down about the medication. I hope everything is going well with you!

Thanks brittany_marie, and happy birthday! I'm doing much better. I've been a little low again just this week, but in context, it's not surprising. I just went full time with one of my jobs, and I'm struggling to balance that with my own business, health, and home, and that's stressful. On top of that, my parents move in two days, and a best friend moves in a week. At any rate, other than this stressful week, I've been good. I think Pristiq has helped. I've also been feeling a bit better for whatever reason health-wise (methotrexate? the warmer weather? no particular reason? not being depressed?) so that certainly helps.

I hope Humira works well for you! It did really, really great things for me while it lasted. I always feel a little malaise or other weirdness when I first start an anti-TNF or DMARD, but that typically gets better after a few doses. I hope the same is true for you.

Sorry it sounds like your engagement is off, but if that was the right course for you and your well-being, I'm happy for you.

Thanks so much for the birthday wishes! i'm sorry to hear that you're dealing with so much stress this week, i definitely know how that can affect your physical well being. But it certainly seems like things are going well for you overall and just keep in mind that you just have to get through this short period of stress and everything will be fine!

The Humira seems to being okay so far! The past few days haven't been the best, but i have noticed that I have bounced back a lot faster than what i did before, and after just one injection i really can't expect too much! So im definitely just trying to stay positive and keep up with everything