Joint pain since young age, can't sit or stand for more than an hr?

Bones, joints and muscles
1

I just turned 22, when I was young (about 7 or 8) I had pain in my hips and knees which I only noticed when I sat or stood for an hr or so. My doctor at the time told my mother and I that it was a condition where my bones grew faster than my muscles did, common among athletic children, which was strange because I was not more athletic than any of my friends, however I was considerably more flexible than anyone I knew.

My doctor put me through physical therapy, which not only didn't help but was exceptionally painful. I gave up and since then my joint pain has gotten worse, it's now in all my joints including my spine, fingers, toes, elbows, wrists, everywhere. They get extremely stiff, hurt more and are stiffer in the cold and rain, I can't sleep in any position but on my back arms at my side and legs straight or I will wake up painfully stiff and uncomfortable.

My knees and hips are the worst, because my job forces me to stand for hours. My knees turn red with fever, but none of my other joints do, because of this my doctors told me I probably didn't have rheumatoid arthritis, but never brought in a specialist or did any blood work.

I gave up asking my doctor about it because I was just blown off. Sometimes the pain is so incredible it feels like someone has literally taken a metal bat to my knees and hips. It's sometimes my right hip more than my left, but both always hurt.

My joints creak and crack when I walk or just do basic tasks. I've dealt with the pain for so long I don't remember what it was like without it.

I'm originally from the southern United States which is why one of the Veterinarians I worked with suggested Lyme disease, but I don't know that much about it.

Do my symptoms sound more like Rheumatoid Arthritis or Lyme or even something else? I moved out of state for shool so I can hopefully get a doctor that will listen to me, but I want to make sure I bring them a list of possibilities to work from.

Any help would be very welcome! Thank you in advance!

2

So sorry to hear about all your pain.

am I right in thinking that in the states you can go straight to a rheumatologist( I m in the uk and you have to be referred by a general practioner first)

You have all the signs of arthritis in your joints- Lyme disease does cause arthritis in joints-  could be rheumatoid arthritis or some other inflammatory arthritis. You need to find a rheumatologist who will do some tests.i think it's not always easy to distinguish but I do know the bacterial infection from lyme must be treated whereas RA is an immune system disorder.

Hopefully someone else on the site will be able to give you advice from their own experience as I don't really know about Lyme disease , only RA.

 

3

Thanks so much for your comment! Unfortunately it's the same in the states, at least for my insurance you have to have a referral, the small town I lived in before didn't have a rheumatologist, which is a big reason I think they were not adament about it. I know Lyme can affect the joints due to my limited time working in a veterinary setting, I don't know the degree, I know it sounds plausible because it gets worse over time, which is essentially what happened, can RA start in just a few joints and then affect others? Or does it generally hit all joints at once or only certain joints consistently?

4

Well it varies. But I have to say that as it s your hips and knees predominately, that s unusual. But all those joints can be affected by RA and it seems you ve had this for a while - there is also such a thing as juvenile arthritis.

RA  is your immune system attacking the synovial joints causing swelling and pain. This is often first felt in fingers, knuckles, wrists, shoukders, knees , feet( mine was first in one shoulder then base of thumb a couple of years ago at the age of 62)

There is usually stiffness in joints when first waking for more than an hour- and stiffness if been inactive for a while. Also if you squeeze around hand across knuckles it s tender. There can be a great deal of fatigue and for some, heat or redness. The pain is awful. The joints tend to be affected symmetrically- if little finger hurts on one side then eventually it hurts on the other side too.

i don't personally have back and hip pain but I know this can be part of inflammatory arthritis too.

you sound like you re really struggling there. You need a diagnosis ASAP . 

Find yourself a good Dr and write down everything useful you can eg history of difficulties, has anyone in your family had RA? Tell him/ her  what the vet said. Say about the physiotherapy not helping. Be open about how you feel now and how it is impacting on your life.Ask if they can do blood tests( though these are not conclusive but can help to begin to diagnose) Ask if there s a way to find out if you have Lyme. 

It may take some time but you need a diagnosis before you can get treatment. 

If it does turn out to be RA- there are medications that can significantly help, though it varies what works for each individual. Oh and when I got a referral to a consultant I took a friend with me as I knew I wouldn't take everything in. 

Really wishing you all the best in finding a sympathetic doctor who will really listen to you.

5

Thank you so much for all of your advice! It was tremendously helpful! I know just the relief of getting some kind of diagnosis will help me cope, even if it's something I'll deal with for the rest of my life. It's just been such a struggle for so long and it's only been getting worse and worse. Thanks again! It gives me a lot of hope, I'll make sure to make a list of all my symptoms and prior symptoms and probably take my boyfriend, as I haven't made too many close girl friends in my current area, he's not the best listener but I can probably coax him out with food or video games. Thanks for the well wishes and I wish you the best as well!

6

Rowbirdie has said it all. 

It could easily be RA but also somethng else.... most important is for you to get yourself to a good doctor, get the rheumatologist referral, get him to do the tests which will give you the right diagnois (it may take time) and then get the treatment.

It sounds like you've been suffering far too long.

Rowbirdie suggests you take someone along with you to the doctor. I endorse that but may add that at your age, try and get a good friend on board to support you, not only at the doctor but more generally.

It's in these difficult states where we most need a little help from our friends.

And be kind to yourself!

Best of luck!