19 years old and suffering

[Lilynette]

I've been struggling for two years with this. I've seen two rheumatologists and both tell me the pain i feel is a lie and not possible. I'm not trying to diagnose myself but i suspect OA. Which is hard to consider right? With my age and all. That's what they tell me, "you're too young." but since when did the age matter so much? It is possible. When i was young i had an injury to my left collarbone in football with no pads, it was almost like a fracture the pain WAS SO UNBEARABLE. Well i got a splint and it healed but when it healed my left collarbone had a dent in it, it's pushed inwards towards me. It didnt cause any problems at first but now i think it is. I've researched maluions i think it's called and these can cause OA. A bone healing improperly can cause arthritis changes. Injury can cause arthritis. I used to a very active person playing basketball after the injury. But i can't even do that anymore or play guitar which was my dream. I have crunching in all my joints, not loud kind but the kind you feel whenever you move. I get burning sensations when my toes crack or my neck does, my spine will burn them travel to my tailbone them to my rib cage and sternum. My neck makes this pop rocks sound and gives my skull (the base side) a big headache and my collarbones feel like their weighing on me and a bone has spurred in the middle of my sternum chest. I mean you can clearly see the changes in my body but everyone calls me crazy and no one will help bc im so young. My life is being ruined. They could at least do an ultrasound to check but no one acts like that is possible. All my blood test are normal, x-rays, CT. But they still refuse to xray my left collarbone. The worse is everyone around me expects me to be normal bc i have no diagnosis so im put in a position to fail everyone and suffer at the same time.

[Kieron85]

Brilliant write up. Nice to get so much detail out there. The last bit is how we all feel so straight away your not alone there. And thats the problem im just getting over or around lol. We spend to much time trying to make others see what we feel and I don't think it will always happen. My parents are the best anybody can ask for but they don't speak about my problems ever. I know they care and thats enough for me. I've had these problems for 3 years now and still people say im too young at 32. Thats not the case at all! Just keep at it and somebody will listen in the end. Change hospitals if you have to and keep at it.

[Edu1968 in reply to Kieron85]

You are so right Kieron85, because you can't see pain, some people think it's in your head, I always think really!! All I can say is keep fighting until a health professional listens to you. I did exactly that and was diagnosed at 32 with Rheumatoid Arthritis. I thought this was a condition you only got when you was a lot older. But to me it just shows how ignorant some medical professionals can be, if your symptoms are not by the book, it's in your head. Absolute rubbish. We are the only ones that know are bodies. No one would choose a life of pain. My personal view is there are some excellent medical professionals out there you just have to weed out all the others. Try to keep strong I know sometimes it's very difficult. I had to go through 3 Rheumatoid Arthritis consultants before I found the right one. So persevere.

[Mary-intussuception]

Hasn't any Doctor arranged for you to have an MRI scan yet?

You are just going to have to see your doctor again and keep on at this. Why not print your post and ask them to read it?

Not acceptable - being told you are telling lies about your symptoms.

Did you get copies of all your blood tests? Were you tested for CRP and / or ESR and any Antibodies?

When pain very sever and movement severely restricted there is always the option of going to the ER.

Is there anyone at all who could go with you to see the doctor next time for moral support?

Hope you get some help and diagnosis soon.

X🐥

[Sallyk42]

Bless you I can't believe they think you're lying!! What for?? To gain a life changing sum of benefit?? Disgusting.

Go to ane hun. Just lay it on like it's your worst day ever!! Demand a second opinion and third etc. You have rights and it might mean changing your Dr too. Don't give up!!

We all spend too much time trying to let people realise what's wrong with us. Sad world we live in

[cyberbarn]

" I've seen two rheumatologists and both tell me the pain i feel is a lie and not possible."

Was that the words they actually used? Because there is a lot of misunderstanding about the nature of pain.

Pain is in the brain, it isn't in the part of the body where your brain is saying that you are feeling pain. What happens is that a signal is sent to the brain, and the brain processes it and decides if it is acute pain, that is where there has been an injury, or touch, or a chemical stimulus or what ever.

The problem is sometimes that message gets mixed up, and the brain thinks there is pain where there isn't. This could be what they mean. There is no physical cause to the pain anymore, it is just the brain thinking that there is still pain. This can easily happen with injuries.

You have described your pain really well, and one of the words you have used is burning. That type of pain is called neuropathic pain. That takes a different treatment to make better than acute pain, say the pain when you break a bone or stub a toe.

Sometimes the whole body can become highly sensitised, so that the brain thinks that there is much more pain around than there really is.

As for guitar, if it was really just osteoarthritis then that wouldn't stop you from playing the guitar. Have you seen Keith Richard's hands lately? He has OA and still plays. Read this article about it.

ronankavanagh.ie/musicians-...

There are things that you could do to help yourself, maybe this website might help?

paintoolkit.org

I hope you can learn more about pain so that you can manage it yourself, and understand both the pain and the clinicians better.

[Mary-intussuception in reply to cyberbarn]

cyberbarn.

This is why more investigations and correct specialist referal and diagnosis is needed.

No one has ordered a MRI scan yet or Nerve Conduction Studies or made a referal to Neurologist.

Rheumatologist could have done this.

I am not sure, though, of the 'system' in US , what their procedure is.

[debsreed in reply to cyberbarn]

Check out CRPS. NOT nhs website its useless.