Weird joint pains and no clue what's wrong

[_cherry_]

Hello,

first of all I would like to say that I am new and I am not so sure this is the right place...

Anyways, I am 17 years old and I have had weird joint pains all my life. According to my mum, even as a 5 year old I would sometimes sit in bed crying with joint pain. She and all my doctors back then said/thought it was growth pain and it mainly affected my ankles and knees. At some point, my PE teacher asked if I had any connective tissue disorder because my ligaments appeared to be "loose", and I almost constantly sprained my ankles/knees and had a lot of hip pain sometimes. The pain would come in episodes and start out of nowhere. At age 11, I gave up sports almost completely due to asthma and those constant injuries. Generally speaking I would say I am a very flexible person, which was probably why a doctor suggested Ehlers Danlos when I was 11, but that was never looked into again. I remember that when asked to describe the pain, I would say something like "scorpions stinging into my bones". Ibuprofen helped when I was little, but that stopped when I was like 10 or something. Usually I would just try to ignore the pain and move on with life. At some point, it also started affecting my elbows and wrists, but again I just thought it was my flexible joints and that I could not do anything. The first time I was tested for arthritis was when I was 15, but it all came back negative. Since that time, it has been getting worse; each "episode" of pain seems to be worse and longer. My joints never look red or swollen, they are just painful and stiff, especially in the morning. It is always just one joint (elbow/wrist/knee/ankle), but on both sides. I was tested for arthritis again, negative again. No signs of inflammation in my blood work, no fever or anything, however inflammations don't always seem to show up in my blood work and I rarely get fevers (if I do, higher than 40°C). Cortisone helps me however, which is quite weird. My doctor says that it seems as if my body is just attacking itself sometimes but then completely lacks an immune response at other times...right now I am on a one month treatment plan with Prednisolone because I recently had one of those "episodes", but this time it affected my elbows, wrists and fingers, which was new to me. I couldn't even hold a pen because of the pain. This time it also took longer to kick in and whenever I reduced my daily dose I could feel some pain again. I am just really confused and annoyed because I often get told that it's in my head, that I am too young to have arthritis, that my body is weird etc. and I just want a diagnosis for this because it's also interfering with school.

Any advice what this could be or what else I could do? I just feel so lost not knowing why I am curled up in bed crying in pain on a regular basis and I am tired of having to explain myself without knowing what is wrong.

[PMRPete]

Juvenile arthritis?

kidsgetarthritistoo.org/abo...

[Hidden]

Sadly, you are never too young to have Arthritis. There are so many different types. If you visit arthritisaction.org.uk/ then the heading Living with Arthritis, You will see an explanation of the main types of Arthritis, which may help you.

[_cherry_ in reply to Hidden]

Thanks for your reply,

I think my doctors were/are very skeptical if it is arthritis, because as I said my blood work is normal and my joints look normal except for being more flexible than with the ordinary person. Also, this time the cortisone took longer to kick in, which according to my doctor doesn't fit with arthritis. However, he said that there are people who do have arthritis but it doesn't show up in their blood work...I am just not sure if I should see a specialist because I have been to so many doctors and no one was able to help me so it really seems hopeless...

[helixhelix]

I don't know about juvenile arthritis, but certainly for adults you can have it without anything showing in your bloods. I never show any inflammation according to my blood tests - even when I have hot, red and swollen joints. Luckily my rheumy looks at me not the piece of paper.

I would ask if you can be referred to someone who specialises in juvenile idiopathic arthritis. As well as the site above, look at jia.org.uk

[_cherry_ in reply to helixhelix]

Hello,

thanks for your reply. And I thought I was the only one whose blood is a bit weird...the problem with specialists in my area is that they are pretty full, the earliest appointment available would be in December, but probably I should give it a try or consider finding a doctor outside my area.

The website is really helpful, thank you!

[Frankie24]

Hi, sounds quite confusing for sure. I am wondering if anyone has ever mentioned fibromyalgia as a possible diagnosis ? This could explain your pain and can be quite debilitating. When I have flair ups it usually affects my legs and feet, and there have been times I could barely walk, however it affects the body as a whole. I am sure there are many other possibilities just thought I would mention this as I did not see where anyone had appeared to have mentioned it in your details.

webmd.com/fibromyalgia/guid...

[_cherry_ in reply to Frankie24]

Hi,

I sure thought of it. What doesn't fit is the fact that it's supposed to affect the body as a whole, but I guess for every rule there is at least one exception. I think it might be worth it to discuss that at my next doctor's appointment, thank you.

[Frankie24 in reply to _cherry_]

That is what the overall diagnosis suggest, but I know when I have flair ups it is pain in only certain areas that affects me really badly. Usually my doctor does the prednisone dose pack as I have kidney disease and don't like pain medication and cannot take NSAID's. I have a concurrent diagnosis of chronic fatigue syndrome which is related to fibromyalgia, check this link out as well. Good luck, hope you find what you need to so you can feel better, I have been dealing with it all since I was 18. mayoclinic.org/diseases-con...

[Neverending63]

Hi I'm sorry you are struggling at such a young age. When I was diagnosed with Rheumatoid arthritis I was also diagnosed with hyper mobility of my joint. I have always been very flexible as well.

beta.nhs.uk/conditions/join....

This website may help a little. It will explain what it is.

Hope this helps.