27 Diagnosed with OA

Hey! 29 with RA and severe OA here!

That fucking sucks! I think something you may need to hear, that I can say with confidence, is: holy fucking shit man that fucking blows and you are by no means over exaggerating your pain to anyone else or yourself. That’s all legit and sounds like a shit-ton of pain.

If you ever find yourself thinking things like “well I can still (action) so it must not be that bad,” remember that your pain is still super fucking valid. This sucks. I’m sorry. I know that’s not super uplifting to hear but I need people to reassure me I’m not over exaggerating or somehow faking subconsciously to validate my pain.

Second of all, you can have rheumatoid arthritis with a negative rheumatoid factor. I’m glad your rheumatologist seems to actually be fighting to help you figure things out. The waiting game without answers isn’t easy.

Third of all, some minor questions partially for my own curiosity (feel free to disregard): Were you on medications between symptoms showing up & getting diagnosed with OA? If not, for how long do you think you were in that pain I medicated?

This sounds like it could be a lot of things. I’m definitely not a doctor. But either way if they’ve diagnosed you with OA, you’re not alone in being a youngin with it.

Finally: I definitely suggest joining the discord channel https://discord.gg/XNgsWr

We’re not doctors, and can’t give real medical advice, but it’s a wonderful community that’s been very validating for me and full of people who have helped me learn how to navigate through some choppy waters.

Best of luck!

Agree with coggler, it sucks.

I have systemic degenerative OA. My rheumy said it's different than normal OA in that it affects the whole body, not just a few joints. Mine is focused in hands, feet, knees, spine, shoulders, with my first noticed issue in my lower back. Degenerative disc disease, etc. This was over 25 years ago, and I kept getting told I'm too young to have all those issues. Old folks at home called my type of arthritis the 'crippling arthritis'

I did have 2 underlying issues that were not readily noticable. First was genetics. My paternal grandmother had the same thing, as did a maternal aunt. Maternal grandmother had a form but much milder. I also have RA on both sides of the family in aunts and uncles. So seems I'm destinied for it... The other issue is also in the genetics a bit, and that is celiac disease. When I was diagnosed, (only took 15 years because of the arthritis), and got off the gluten my inflammation reduced drastically and put my arthritis in remission for a few years. Eating the anti-inflammatory diet helps me a lot.

None of this may fit into your case, but if nothing else, it lets you know you are not alone. I had one Dr. tell me and my wife I have an incrediblly high pain threshold. Honestly if I didn't some days I wouldn't be walking around, because the pain is real and it is bad. Don't let someone who has not experienced it tell you otherwise.

Some Tips, these are all just from my life having to deal with this for years and try to keep going. Don't let it stop you. Do something that helps you keep a good positive mental outlook. Whether it be music, or a hobby, or faith and prayer, or close friends, or just something that you can do to keep your spirits up, because some days... some days... Also keep moving. Yes I know it hurts and it's a fine line between moving too much and not enough. Things I've done.. at the local YMCA, Yoga for arthrits and water aerobics, and don't laugh, but the silver sneaker classes for the seniors. They do good exercse that is targeted to be good for the joints. Best exercises for me was a Tai Chi for Arthritis DVD I got from the arthritis association. With my hands I need aids and tools that help, like cushioned handle tools, and jar openers, and offset knives, etc... gloves that help me grip. And when my spine and knees make it hard for me to walk, I use a good sturdy cane. Honestly my pride kept me from it for years, but when I finally succumbed, I picked a nice stylish one, and it has helped A LOT.

Sorry it's becoming too long... so I guess a TL:DR would be just know you're not alone, and you can deal with it, you are not a wimp, it does hurt.

Totally agree with everything Coggler said above, and also hope you join us on discord.

So sorry you’re going through all this, it totally sucks! If it’s of any consolation, a lot of us arthritis folks have to suffer through a long time, or see multiple specialists before anyone finally figures things out. So, don’t lose hope and keep advocating for yourself! Keep going back. Moderate pain is not ok. Limiting your ability to enjoy life, and be physically active is not ok. If need be, focus on that with them and how poor your quality of life is at such a young age. Also if you need to, seek a younger rheumatologist who might be more open to aggressive treatment, or even just agreeing that seronegative autoimmune conditions exist. A lot of older/old school rheumatologists can be more hesitant to want to treat without clear, decisive blood work. My last rheumatologist told me that my blood results could be stone cold normal and he’d still say I had an autoimmune issue and needed treated by a rheumatologist. You don’t necessarily have to have positive blood work, and it certainly doesn’t need to be a clear cut case.

Also, side note, it’s pretty common to go into remission from RA during pregnancy.

Last, have they trialed you on a course of prednisone? If they haven’t, that’d be my suggestion. It was what finally convinced my rheum that I do indeed have autoimmune arthritis. If you take the prednisone and respond to it, there is a high likelihood that you have an AI. When I took it, it was night and day difference. I was basically fine by the second day. Not responding to sulfasalazine wouldn’t be uncommon either, btw. Not everyone responds to every drug which is another part of what makes treating all this so tough. A lot of people try 4 or 5 or even more drugs before they find the one that is right for them.

Keep your head up! Keep at it. Do not let the doctors make you feel minimized or crazy. Your arthritis and pain are real and it’s nothing to do with how well you “deal” with pain (and also you shouldn’t have to “deal” with pain).

Definitely not normal and you are not a wimp! So sorry you are going through this.

I would honestly suggest a second opinion if you can get one. Sulfasalazine is only a first line treatment for RA and just because it didn't do anything doesn't mean that you don't have seronegative RA (also doesn't mean you do).

I would not give up in looking for an underlying cause, because the damage could just continue to get worse. You deserve an answer and to find something that will bring some relief. <3

34 Here, I was diagnosed with minor DDD and OA Cervical spine at 22, Now at 34 Its moderate to severe Cervical and minor lumbar, The pain can be unberable at times, Just keep at it, try and find a cause, while yes OA is degenerative, and there may not be an underlying cause, I personally wouldnt give up yet,

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I completely understand wanting an answer, I havent found one yet, but you just might Keep at it.

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Basically what i am saying is You are not a whimp, keep fighting for your health, you will make it through.

WoW! Just joined y'all and I am thrilled! I have OA and at an early age. Feet. But they are flat. Over time I knew that I was going to have issues. I went in for a hammer toe surgery and I ended up getting multiple surgeries 3 times. Consecutively, It was almost 2 frickin year before I had 2 normal shoes on. Had an excellent surgeon who was aghast at my bad luck. My bones in my right foot refused to fuse back together. I have 17 pieces of hardware in it. During this 2 yr time I was swollen, kept gaining weight but no normal obvious reason. After I finally got the ok to be released from my Ortho doc, I go to My Primary. Ask for RA test, Thyroid, and hormone labs. Following night he calls me after hours with my results of severe RA, literally off charts, thyroid wasn't working much and was completely POST menaupausal. Pissed me off at myself because if I'd slapped myself and put 2&2 together I should have junped on the. RA. I am a medical person who is extremely for patient advocatecy. Spreading the word among frustrated patients and families and tell them to speak up for themselves. Get an answer. Otherwise seek out a different physician. I know how often other people basically are not really investigated as to get a valid diagnosis. And has been a huge issue with me. But I failed to look into my mirror and see that something wasn't adding up.
Too bad so sad for me. Sometimes you really force yourself to look at you. Really good. In the eyes. You know that something aint right inside you. But finding a good doctor who really wants to find out what is really going on, we're screwed. And we hurt. Bleak