Wow im so unhappy.

[Lilynette]

Im 18 with tinnitus, carpal tunnel, ulnar nerve entrapment and possible OA. Everyday i stuggle so much, i have to act like im strong. Doctors are so slow on helping me bc since im so young its hard for them to believe i could have OA. As if tendons slipping off and bone spurs weren't convincing enough. Im trying my best but im so depressed. And i can't even show it.. I need caresource bc i know i need an MRI more than anything. I also need a rheumy but of course the first one i went to didn't believe a thing i said. Im so lost

[nomoreheels]

So have you been given a confirmed diagnosis now Lilynette or have you diagnosed yourself from reading up on your symptoms? I'm a bit confused if you say you're still looking for a Rheumatologist & that they find it's so hard for them to believe you could have OA. What did the Rheumy you saw actually say? It's just that you either have OA or you don't, whatever your age he or she will know the symptoms & if unsure should have taken a blood test or ordered x rays at the very least, not necessarily an MRI, though that may be helpful if you have another joint or bone problem such as a torn meniscus that occasionally causes your knee to lock.

I'm sorry if it is OA, to have it so young. I have it too but I'm a lot older than you at 56, though it was diagnosed at the same time I had my RD diagnosis but I was still 30 years older than you. It is known for younger people to get OA, in fact you can get it at any age which is why I don't understand why the Rheumy you saw didn't consider that. Risks are often from an injury to the joints (or overuse, sound familiar?), being overweight or having knock knees or bow legs. Do you have any family members with it, I don't recall you saying?

I take it you've had it confirmed you have both cubical nerve entrapment & carpal tunnel & had nerve conduction studies or tests? If so from that you'll understand that the usual cause is inflammation, possibly from overuse, & that would suggest it may well be from playing your guitar. If you are still playing it best you don't, it will only make the situation worse. Both can be operated on to release the nerves but I would think before considering those your team (when you get one) will suggest things like splinting & giving you specific exercises to do. Meantime you could try having someone wrap a towel round your arm before you go to bed & secure it with tape to stop you bending your arm whilst you're asleep. If it does mean an op I can say it has a good success rate. I had carpal tunnel release & I had relief immediately after the anaesthetic wore off.

Does your primary care doctor not know about OA or how to treat it? Sometimes it's not always necessary to see a Rheumy, the medical treatment for it isn't with specialist meds & exercises for it can be found online by your doctor to print off. My Rheumy requested my GP takes the lead on my OA & a good job of it she does too. It might be worth you seeing a different doctor if you've been seeing the same one, one with an interest in musculoskeletal diseases or sport injuries. It might be worth a try, anything to push for diagnosis & therefore treatment I'd say. 🤔

[Philip]

There's only one thing we all need and that's a miracle.

You are at an age were you should be out enjoying life and you have to make the most of a bad lot.

There always someone to chat with, take care.

Philip

[Horsemadhere]

Sorry to read you're having a difficult time at the moment. I also have a trapped ulnar nerve. What treatment have you had for it? Xx

[Ruffles13]

Poor you, so young as well. Big hug as all these pains do get you down, accapuncture is supposed to help and I now take turmeric,ginger,black pepper I put a bit of honey and hot water so I can drink it, also helps a bit.

[Lilynette]

The rheumy i saw just seemed off, but he exaimed me like i with simple checks of stretches. He didn't look at my bone spurs, he didn't even want to listen to the crunching of my joints, all he told me was that i was perfectly normal and just skinny. I mean i know im way beyond that, im in so much pain. I have only officially been diagnosed with mild carpel tunnel. The entrapment was pointed out by two doctors but they've done nothing about it. And i suspect OA bc we've been through all the inflammatory tests and everything is normal, so i assume maybe something non- inflammatory. I don't have redness, illness ya know common signs of something like RA. So i really need an MRI i feel like it'll show them something their missing. Maybe i can get a surgeon to do a joint aspiration. That's what im trying to do but i also have work, no transportation, and my insurance might be taken away soon. I must have something tho ive never felt this bad for so long in my life. It to feel it slowly get worse is heart breaking.

[Seenie]

Lillynette, I'm sorry you are in this predicament. I agree with you: there is something they are missing. The key reason I say this is because I really don't think an eighteen year old gets OA from nothing. Oh, I could understand it if you'd had a serious joint injury and now you have OA in that joint ... but that's not what you are talking about.

Combined with carpal tunnel, tendon issues, bone spurs, and depression, I think that "just OA" isn't a good enough explanation. Hey, are you tired, bone tired, even after having a good sleep? Anyway, there has to be one explanation for everything that is happening to you, and my guess is that it isn't simple OA.

They've done the blood test for inflammation and there isn't any? Well, there are types of inflammatory arthritis that don't cause a rise in the inflammatory markers (CRP, ESR) on a blood test. The one type that I am familiar with is Psoriatic Arthritis: I was told I had "OA" for about fifteen years, because my inflammatory markers were normal. I had other things (like carpal tunnel) as well, but they were blown off. I started thinking that I was a a lunatic.. (OK, I am, but not about my health issues, as it turned out.) What led to my diagnosis was some relatively minor-seeming skin problems (manky toenails, lifting fingernails, dry itchy skin) that turned out to be psoriasis. Once that was diagnosed by a savvy doc, everything (and I mean everything that had been wrong with me for twenty years) fell into place. But that did not happen until many of my joints had sustained major damage, and I'd had two joint replacements. I am now under the care of excellent rheumatologists who have this disease of mine under good control. I believe there are other kinds of inflammatory arthritis that can "forget" to raise your inflammatory markers too, but I'm not a doc, much less a rheumatologist.

You need to persist, Lillynette, until what the doctors tell you makes sense to you. You may not like their answer, but if you can honestly listen to them and say "Yes, I understand why they are telling me this and it makes sense." you are not done. You need to continue your search for another doctor or at least another diagnosis until it makes sense. And it doesn't at this point. It's hard, but getting to the "it makes sense" point is important, because it's you that has to live with the consequences of their diagnoses.

I hope this helps. Keep in touch.

Seenie

[Lilynette in reply to Seenie]

You have a really good point on it possibly being PA. It would make sense, i do feel tired, bone tired, all the time even with rest. Once i get moving i can feel okay but if i sit still pain just invades me. PA can affect the sternum also and cause chest pain which i get from bone spurs, i used to have really bad asthma as a kid. PA is common in plp who test negative in RF for RA which i did, plus my nails on my toes look odd and went through a toenail falling off era when i played basketball and wont grow back normal now. Only thing is i feel bone on bone rubbing everywhere too. I even have bunion forming possibly i think. Ive had eye issues with light and blurriness also. I may also have TMJ causing my Tinnitus.

[Seenie in reply to Lilynette]

Hmmmm so what's the story of your skin and nails? Have you been to a dermatologist? Does anyone in your family have psoriasis or in diagnosed skin problems?

[Lilynette in reply to Seenie]

Ive had bumps on my arms since i was a kid but it never bothers me, and yes my moms side has it. And my toenails are the only ones that look odd after falling off during basketball season

[Seenie in reply to Lilynette]

I think I'd be speaking to a dermatologist and/or your rheum about that. If you go to a dermatologist, speak to them about the "OA", your family background, and all your mystery symptoms. A derm could be helpful in getting this sorted out.

Best of luck!