Hi there, new poster here. Just wondering if anyone could give some advice or support, as I constantly get the impression from doctors and those close to me that I am not taken seriously. I guess starting from the beginning would be best, so here I go.
I am 17 years old, and eight months ago I was working my second ever job as a waitress in a retirement home. At this time I had also just begun taking a mixture of online and college courses at my local community college, and was also an active hip hop dancer at a dance studio in my town. As you can imagine, I was quite busy. Prior to this time, I had been a long time digital artist, thespian and gamer. However, in October of last year, I began noticing weird things happening while working 2 hour no-break shifts at my job (sometimes working two or three of these shifts in a day.) When picking up trays and serving food, my hands would become abnormally tired very quickly, to the point of it being painful and getting the feeling that I was going to drop it. For the first two months of this happening I ignored it. I have always been the kind of person to avoid admitting I have a problem to someone, and I usually just want to ignore it until it goes away. But it didn’t go away, by December I thought there might be a chance that I need to do something about it. At this point I was dropping things, like cups and mugs, on a regular basis. I felt clumsy, and incapable. I was also getting frequent pain outside of working. Seemingly random sharp/dull pains that would come and go in different parts of my hands. So, in the beginning of December I made an appointment with my primary care physician. In this appointment, all I was told was to work less, and that I probably had carpal tunnel in both of my wrists. I took a written note from my physician to my work, and stopped working at this point to hopefully heal whatever it was that was going on. I also began physical therapy after this point.
January rolled around, and by this point I didn’t feel that it was any better. I was doing strengthening at least every other day as advised by my PT, but I still experienced pain. There was a point in December where I was working on an art piece and my drawing hand seized up and I had to stop and take a break from the pain. I scheduled a new appointment with my doctor, and this time I was referred to an Orthopedist and had x-rays taken. At this time, my x-rays came back normal, and all the Orthopedist had to say was that I should come back in 6 weeks for an mri if it wasn’t better. A month after this, still having continued with PT, it still wasn’t better. I went back to my primary care again, and my physician noticed that my hands were slightly swollen while she was looking at them. Concerned by this, she said that it may be RA, and did a blood test. My results came back that I had a “high” ANA rate (1:160, which I am aware is not incredibly high) and I was also slightly anemic. Just to make sure, my physician referred me to see a rheumatologist. (In the mean time I went back to my orthopedist who just told me to come back again in a few months for an mri if it wasn’t better for a SECOND time. I also continued with PT.) When the rheumatologist appt rolled around, I got no new information. By this point, I had developed a painful lump at the base of my thumb that has since been explained as the joint sliding out of place, and I also had an equally as painful (still unexplained) smaller lump on the highest joint of my pinky, preventing the finger from bending straight. The rheumatologist explained it as Reflex Neurovascular Dystrophy, a diagnosis similar to amplified pain syndrome, but not nearly as well known and not researched as much. Keep in mind, I have also experienced less frequent but sometimes intense pain in my knees, toes, elbows, and shoulders. I did not agree with this diagnosis, it didn’t explain what I was experiencing, and there was no ‘solution’ or helpful treatment other than more PT. I went out of this appointment in tears. I felt like no one I was seeing understood what I was experiencing, and wasn’t giving me anything helpful to figure it out. The only medication I have ever been advised to take is Ibuprofen, which doesn’t help in the slightest. I don’t experience stiffness, but my hands get cold VERY easily, and I’m talking cold to an uncomfortable level. When I try to do anything considered “laborious” my hands swell up and get red. Also, when I stand up my toes get bright red and warm, as far as I can tell they swell as well. I’m tired consistently, especially when I am experiencing more pain. I’m just not sure what to do, I’ve been told that I don’t have RA, but my pain levels are only increasing, and it seems nothing I have tried has helped. I have a referral in for an mri, (finally,) and my only hope at this point is that it comes back with something helpful. I just feel frustrated and misunderstood. I feel like doctors don’t take me seriously if I talk about pain in anything other than my hands.
Does anyone have any second opinions? I feel like I don’t have anyone to talk to or give me advice about this.
Thanks for reading my wall of text, I appreciate the time people spend to help others on this site.