Down she goes…
So…I’m kinda down. Kind of worried too. I get this way now and then and it usually passes but I find myself operating on the periphery of my life just to make sure things keep going along as they should while, really, I’m feeling pretty terrible.
I had an appointment with my rheumatologist the other day. About three years ago my GP sent me to see her as a new patient, hoping to find an answer for some of the pain I was having. They didn’t know about my spine then so it was still all rather vague and everyone kept wanting to diagnose me with fibromyalgia. I was sent to see a fibro specialist twice and both times he discharged me, telling me that I had absolutely no symptoms of fibro, even though the wide-spread pain seemed familiar…it just wasn’t what was getting me. Anyway, this rheumatologist saw me and was very concerned right off the bat. She was talking about all kinds of auto immune diseases that it seemed like I might be suffering from and ordered up a huge panel of blood tests. When I returned for the results I was told that it was good news – everything came back okay. There was no rheumatoid arthritis, no lupus, nothing obviously auto immune going on. So….I was happy about that, of course, but also a little dismayed. I’d been seen by so many specialists at that point I was giving up on diagnosis. When she told me about the blood test she was pretty curt and then mumbled something about a fibromyalgia pain clinic that she thought I might get some good from and left the room. She didn’t come back…just up and walked out, leaving her resident behind with a baffled look on her face. I was upset and left, in tears, all the way through the waiting area. I felt like she had dismissed me and that all of my concerns were just blown off. I was having trouble walking (had terrible bilateral sciatica then…all nerve related because of my spine but I didn’t know why my legs hurt so much back then) but I hurried out anyway and vowed I was done with specialists. I didn’t want to see any more of them about this…ever. I cancelled my one year follow up that she scheduled for me and just went on with things.
Years later, my GP decided that she wanted me to see her again to see if anything had changed of if she had any new recommendations for medication that I might try. I went back and was met with the same concern and compassion…she talked about all the auto immune issues that I might be facing and took a huge lot of blood work for testing. She had a look at my most recent MRI’s and said that nothing seemed to have changed too much with my cervical spine and the osteoarthritis present there so that was good. She doesn’t really like to prescribe much in the way of pain killers for OA so she had nothing to add there. One of the worst symptoms I have with the OA is headaches that come from the nerve pain (I think) and muscle changes that result from the compression and degeneration in my cervical spine and my body’s attempt to protect my damaged parts. Headaches are not a part of the treatment set for rheumatology so they don’t even want to hear about it. “Not our area” I was told, again when I mentioned it. Her newest resident came into see me for my follow up, as they usually do to collect all the info and then the consulting doc joins afterwards to make sure the residents get as much experience as possible.
“So, have you been looked at for fibromyalgia?” Was her first question.
I must have looked dismayed because she quickly carried on. She basically told me that the OA seemed to be the same as it was last time we checked and that, if the meds I’m on now are taking the edge off the pain and making it manageable, that was about as good as it was going to get, pain control wise. They had no recommendations for changes there. As for the rest of me, they still had no idea. The markers were not found for lupus, again, and even though the RH levels were higher than normal, I didn’t fit the criteria for RH. It was good that none of that stuff showed up but I could feel a dismissal coming and I braced for it.
In the end, after seeing the actual rheumatologist, everything was repeated to me to be sure that I understood. They were not going to recommend anything medication wise. They said that if I could work full time, I was fine, despite being in pain all the time. As long as the meds I’m on now are taking the edge off, that was all I was going to be getting. Then she walloped me with the next bit though….I totally wasn’t expecting it.
“I’ve been talking to the sleep specialist who will be doing your study and we’ve concluded that much of your pain is likely due to whatever sleeping issue you’ve been having. Quality of sleep can greatly affect the body’s ability to cope with pain and there are many studies supporting that. We think, barring any surprising results, that your sleep study will answer most of the questions you have and, hopefully, will be something that can be treated to improve it so you end up with a reduction in pain from the OA.”
…. huh. Okay. I get that….I truly do, however, it was TEN years ago that I started this quest to find out what was going on with my body. Yes, I’ve had sleep issues all my life but it’s only been a year and a half that I’ve been passing out on my feet, falling asleep at work, struggling to hold onto consciousness after I’ve been awake for a couple of hours every day. The pain started ten years ago. I do know the cause of much of it, now that I know what’s been going on with my spine, but there’s nothing that can be done for that, I keep getting told. Nothing. I’ve seen a neurosurgeon and an orthopedic surgeon and neither can do anything surgically to help so I’m left with pain management, however, no one is interested in helping me manage it beyond ‘taking the edge off so I can keep working’.
Okay. All things considered, I wasn’t seeing her again for the pain. I’ve accepted that this is what my life will feel like, pain-wise, for the rest of time and it will only get worse from here. I realize there is no miracle cure or medicine that will help and that I just have to focus myself on moving forward without giving into it until I can’t anymore and, most certainly, the sleep issue is what is causing me the most difficulty right now. The thing that is really bothering me is that the rheumatologist is trying to blame the pain on the sleep issue.
Why is it that having OA all through my spine, disc degeneration in my entire cervical and much of my thoracic and lumbar spine is not enough of a reason for these people? Are there patients all over the place with this condition that have no pain at all? All the docs seem to be looking for a different reason for my pain. They attribute much of it to my spine and then just say ‘well, that is what it is” and we move on. I have joint pain all the time in most of my joints but, aside from arthritis in my shoulders, there’s nothing else going on. I’ve given up on looking for a reason for that since no one seems to think it important, and now docs are telling me that my sleep issues are to blame. For joint pain? Sleep issues are to blame for bilateral joint pain?
Here’s where I get all messed up in the head. Maybe, if all of the pain I feel is being caused by..well, nothing….it’s not really there. I’ve tried this angle many times….even went to see a psychiatrist about it (which totally screwed me for years because that psych visit on my patient record instantly made many docs dismiss my case) and he seemed to think it was unrelated. He totally agreed with the PTSD and attachment disorder but it’s rather unlikely that either of those would cause joint pain. But….now I’m fucking terrified that I’ll go for this sleep study and they will find nothing. Nothing will be wrong, nothing will show up and nothing will be done. They will all look at me like I’m crazy, like many of the previous docs did, and they’ll be pissed that they wasted their time doing such in depth testing on someone who has nothing wrong with her. Yesterday, I didn’t take the stimulants. I wanted to see what would happen if I missed them for several days in a row….kind of to prove that there really is something wrong with me. I started crashing around 11 and by the time 2 pm rolled around I was struggling to keep myself awake. Walking around outside in the freezing cold, running up and down the stairs, splashing cold water on my face, drinking coffee, working standing-up in my office…nothing helped. My eyes would close on their own and I’d start to dream….hear things and see things…the scene in front of my eyes would change from reality to a dream scape and I’d be sleeping and waking and sleeping and waking every time I stopped fighting, even for a second. I got home after work and lay down on my couch and fell asleep….slept from 5:00 pm through to 630 this morning and could have gone much, much longer had I the opportunity. I’m wiped out today and I have a blazing headache…pain all through my body too. I’m worried it’s just a withdrawal effect from the meds though so I’m going to stay off them for the rest of the week to see if I improve. I’m really, really worried that nothing will come of this and then I’ll be dismissed by everyone….forever. So, I have OA in my spine and I keep getting told that’s “all” that’s wrong with me, aside an obvious sleep issue which I’m now worried I don’t actually have. It’s not normal for people to feel this way though so….I don’t know. I just don’t know. I’ve fought so fucking hard to overcome the depression/anxiety and ptsd crap. I’ve dealt with the pain and will continue to do so. I’m trying so damn hard to keep everything going …. if this sleep thing comes up with nothing that I didn’t already know I’m done. I’m sick of feeling like I’m wasting everyone’s time with this stuff. It’s embarrassing.
I guess this is just the way it is. I’m afraid to hope for anything to be found so that I can get back to living a relatively normal life again. Maybe this is just my normal. I wish it wasn’t so damn hard to work with, is all.
Bah. Fuck it. Time to work then I’ll go home and sleep again. Maybe that’s all I’ll ever do.