So, on top of rheumatoid arthritis and osteoarthritis caused in the first seven months after diagnosis because my disease went unchecked, I also have fibromyalgia. Yes, I have that body-draining, pain-inducing, wrenching disease that sucks more of what little reserve that I have left over from my RA. My fibro is considered a secondary disease because I developed it after I developed my RA. Because it is not a primary disease it is much harder to control and handle. And, although I have had moments where my RA is much more controlled, this beast of a disease never likes to listen or do what it is told – it is very rebellious and disrespectful!
My RA is more controlled right now. I am definitely not in remission and I am absolutely not cured. I still continue to flare and swell and I do have my joints lock up on top of it. But, I am much better than I was when I switched from my last medication – Orencia – to my current one – Simponi. I have been through five or six different meds over the last four years and partially because I held onto Enbrel for too long since it was the first medication that actually helped me, although I only got about 20% functionality back.
It scared me to move on from my first one because my disease was just so aggressive and I didn’t want to go back to how bad I was before. But, the transition to Simponi was the scariest and most difficult I have ever been through. Immediately my body threw a fit and swelled up and locked and joints got stuck and I could hardly function during the week there was a delay between the old medication and the new one. Honestly, that just scared the shit out of me. It really did.
Now, the Simponi is working better and as time goes by I can see it building on previous doses so that I am feeling better slowly but progressively.
My fibro, on the other hand, is just a beast of a disease. I have three different medications for it and if I miss a dose I feel it for days. It mocks me and pushes me and throws me out of alignment on a regular basis. I can see it like a spider on the wall just out of reach, taunting me and building its web and catching flies and getting bigger and bigger. There seems to be nothing I can do about that eight-legged poisonous insect. So, my Rheumatologist referred me to a Pain Doctor to manage my pain levels – which are through the roof on a regular basis – as well as my fibromyalgia and the neck and lower back pain I have struggled with rather intensely for about a year and a half.
I got scared when she wanted to refer me, although I knew she didn’t treat fibromyalgia from the beginning. I got scared of what the new doctor would find. I got scared that he wouldn’t understand me and I got scared that I would be so desperate that I would overlook a selfish, flawed doctor because I just wanted relief. I did that once before out of frustration and desperation and lack of energy to fight with my provider, who was supposed to be helping me. I regretted that Rheumatologist and walked away after six months because I have to be able to trust my doctor and look at him or her as a partner in this journey. Besides, I pay their damn paycheck and I pay them to help me. If they don’t help me and are more interested in their ego then I am done.
My neck swells. That sounds odd and I am afraid to tell people because who has ever heard of that? It gets hot and I can push on the fluid surrounding the vertebrae in my neck when I flare. When it gets really bad I get a migraine. Of course, the fibro already gives me migraines so that is a double whammy. And, I am not talking about a tough headache that makes it difficult to concentrate. I am talking about a headache that makes you lost in time, unable to tolerate light or sound, and makes you yell at your kids to get away from you because the slightest touch will make it worse. I am talking about the kind of headache that makes your whole body heave and you have to throw up and you can’t take one damn pill that keeps you afloat. I am talking about a migraine that lasts for 24 hours or more where you bury your head under the covers and just wish for a little while that either someone would come and chop your head off or that you would die.
I get the kind of migraine that causes dizziness, nausea, and the inability to even tolerate water. By the time the headache is gone, my body is so sore and stiff and so wracked with exhaustion from the symptoms that it takes at least another 24 hours to get over it – despite the fact that I have to keep moving and if I don’t work I don’t get paid.
In such desperate circumstances you would think I would be running to the next doctor – right? But, it isn’t like that. Seeing a new doctor is always risky. What if they don’t treat you correctly? What if they miss something? What if they push you in and out of their office so quickly that they don’t really answer your questions? What if they are clinical and cold and you feel more alone and afraid after a visit than before? And, what if they just don’t believe you because they also believe the millions of false ideas that are circulating on the Internet and with “regular” people about your disease and pain levels?
I have been told before that I couldn’t have RA in my lower back because it doesn’t “normally” present that way. And, yet, my husband’s back is riddled with RA. That is where most of his pain resides and it is worse in his back than in his hands and feet, although they can get really bad too. I have been told by doctors that RA can’t exist in all kinds of different places – although it is a systemic disease and can be present anywhere from your heart and lungs to the tendons in your ankles to the joints and bones at the tips of your fingers. One of the reasons it is so difficult to cure and treat is that everyone’s disease manifestation and path is so very different. No two people are alike. Yet, doctors say such ridiculous things. We live with ignorance and fear from the few doctors out there who are willing to and have been trained to treat our diseases.
So, yes…. I am scared of a new doctor. I am scared of the additional cost of another specialist, and I am scared of the results, and I am scared of what he will find. But, I have to seek out that help and I have to keep pushing and I have to keep trying to make the quality of life for me and my family better. I just have to. Who will do it for me? No one……