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No diagnosis yet..

Jun 07, 2017 11:05 PM

So I'm 19 and I have had chronic pain since when I was 16(maybe before too, but i really have bad memories and I hardly remember highschool). I never had any injury, accident. It began with only the knees hurting and I found myself complaining all the time about it and finally my mom decided to take an appointment with our doctor. But it could only be right at the end of the summer, one day before taking my plane to go to Europe for school(it was 6 weeks in Berlin and 8 weeks in Salamanca, Spain). I absolutely could wait for that because if I went to the appointments it would be way too stressful for me and my mom since we still had to drive maybe 8 hours to the airport.. So we decided to go to the hospital where I could go without an appointment.

The doctor there said that I had Patellofemoral pain syndrome. I was really happy to receive a diagnosis, and she gave me advice. To buy a brace, do physiotherapy, etc... which I did. But for the following years, I developed chronic pain in more and more joints. Now I have pain in my jaw, my shoulders, my back, my elbows, my wrist, my fingers, my hips, my knees and my ankles. Not all at the same time obviously.

I was tested for Rhumatoid Arthritis recently. My family's doctor said I needed to wait for a really big flare that went for at least a week. So I waited for months, having pain, but always thinking it wasn't painful enough or because I never remembered if the pain stayed for a week. Finally, at beginning of May, my mom came to Québec City to pick me up so that I could come back home for the summer and we had a 5 hours ride. I cried three times during those 5 hours because my left elbow and shoulders were hurting so much. I also had pain during the 5 days before. So my mom decided for me that I had to go take my blood test in the next week. I did it and it was negative... The result really dampened my mood and discouraged me a lot. But I have an appointment with my doctor on June 21th

I now think that maybe I don't have Patellofemoral pain syndrome ? Because I now have pain in almost every joints of my body..

edit: I also just realised that I didn't see a lot of people under 25?

Jun 08, 2017 3:25 AM

Hi, I'm 17 and i've just been diagnosed with a flexion knee deformity. One of the reasons I have widespread pain is because I've always walked on bent knees which then set my hips out of line which then lead to scoliosis and kyphosis which caused neck and shoulder/arm pain. Maybe something similar has happened with you? If you aren't walking properly it can cause other issues like mine which cause pain and injury. Also, other forms of arthritis don't show up on blood tests such as osteoarthritis or juvenile arthritis. It's possible that there may be some other form in the mix? I don't know if this was helpful or not but it might be worth considering? Hope you get some answers soon 😊

Jun 09, 2017 12:22 AM

Awe Alala🤗 I'm so sorry . You was told you have One thing and now you are re thinking if they was right .. I hope your doctor's appointment goes well and plz keep up posted. (Gentle hugs My friend)) have a great night rest. Sending prayers your way.

Jun 09, 2017 6:52 AM

One of my mystery illnesses sounds a lot like this one. I have a cane coming in the mail tomorrow. I'm 24 and very scared to use it, but I've fallen in the house before and some days I can't walk in stores without at least a cart to hold on to.

Recently I went to get a cart in the garden section of a home improvement store and an old lady quickly said "Oh that one's mine," saying she'd asked for one first. She was walking fine and I was visibly limping. An employee felt bad for me and went out to get me another cart so I could walk a little better.

I hope you get the answers you need soon. ❤️

Jun 09, 2017 10:51 AM

Alala, I have Osteoarthritis and they thought I had RA as well but the blood test came back negitive but, he pulled an ANA panel and later on found out that I had Sjogrens Syndrome, I have joint pain all over and dry eyes and mouth and now my skin is dry.. My hands. And feet stay inflamed. It took year's to get diagnosed, don't give up hope on finding the cause, were here for you and I'll be praying for you!

Jun 09, 2017 11:17 AM

I'm sorry to hear of your stories. Fortunately, my issues are no where near this severe. But I do know that chronic pain is a real pain in the proverbial atom bomb. Have you noticed any particular foods trigger your issues? As compared to others?

I only ask, as certain foods can have anti-inflammatory properties, though it is difficult to provide the body with the levels that chronic diseases and chronic illness require to provide any sort of significant or noticeable relief. I would suggest looking into autoimmune diseases as well, also if possible try find a fb group for the original diagnosis so you can ask its members for advice and learn what other complications people have.

I have an infectious disease passed on by mosquitos and although viruses are very widely researched since medical science started. Medicine is always progressing and the answers to our questions have not always been discovered yet, as it requires the right person to ask the right questions. And together we are stronger, chronic diseases shouldn't need exist or be so difficult to diagnose, however without the patients - doctors and specialists would have no idea about chronic diseases, we are part of the solution too.

We can always hope and I am convinced that the medical practise will needs to invent the technologies off Star Trek to scan our bodies and discover the specific causes rather than the current long winded processes to get to the bottom of problems.

Good luck mate.

Jun 09, 2017 11:41 AM

Rodgerthat, I agree, when I got the Sjogrens Syndrome, I did as much research as possible that was available and now I'm part of the Sjogrens syndrome foundation. I eat food only that don't cause inflammation, I try to do my part to better my flair's because of the inflammation caused by the disease.

I believe that this will one day be a cure of our diseases, but until we must take an active role in taking care of our selves until that day.

Jun 09, 2017 11:48 AM

Until that day comes and it will, Laugh, joke, play with your mind and others in a friendly way, as it's the best medicine going around. Even when your down in the dumps, a little bit of humour can uplift your immune system a notch or two, plus it's free and no one can buy your own humour it has to be given freely and I believe their is also healing for the person who is also delivering the humour to others. Good luck on your journey, I will keep an eye your paths keenly. I'm sure they won't be empty of challenges, tears and also the most important of all, moments of realisation too.

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