I must say that my latest symptom is not a whole lot of fun. This all over pain really bites. Before, the muscle weakness was pretty much an inconvenience – yes it sucked, but being in constant pain is well… a pain!
I have tried:
OTC pain killers
Prescription pain killers
Prescription sleeping pills
EMS machine (electro muscular stimulator)
Topical pain medicine
Nothing seems to take the pain away completely and what does seem to make the pain tolerable doesn’t seem to last. I keep trying to push through the pain, take something to bring the pain down to a tolerable level and get on with things. But everyone has their breaking point. I thought I was building up a tolerance to the pain, but every time I seem to go a stretch without having to call in or cancel plans I hit a wall and I’m taken out of the game for a few days again.
What does it feel like? You know that achy feeling you have when you have the flu – it feels like that. Most of my muscles and joints hurt and I almost always have a tension headache. So imagine that feeling, and then it feels like I’ve fallen down a flight of stairs. Not a whole flight, just like 5 or like I’ve taken a tumble because I’m sore in addition to being achy.
So my latest routine to battle the pain is this: I do the nightly exercises and stretching as assigned by my physical therapist and chiropractor. I go to bed early so I can take a prescription sleeping pill so I can sleep through the pain and at least get a good night’s sleep and therefore I’m not sleep deprived. I get up after about 8 hours of sleep, I’m in pain. I immediately take my prescription headache medicine and an OTC pain killer. I do my morning exercises and get in the shower and hope that the hot water will help the reduce some of the pain. If by the time I get out of the shower the pain killers and hot water have not done the trick, I bust out the EMS machine or massager and try again to get rid of the aches and pains that way. If I am still in pain, it is time to call in to work or cancel my plans and place ice packs on the most painful areas to numb them because by this point I know I’ve lost the battle. The ice packs are like my white flag.
I was taking really strong prescription pain killers to combat the pain, but those were so powerful they left me in a daze and I was still completely useless. Plus it was rather depressing to have to be that out of it just to feel relief. So I decided it was not worth it to take the prescription strength pain killer because it just felt like I was putting myself into a coma like state. I’d rather be in more pain and at least be able to have complete thoughts.
I guess what makes this hard is that the pain is constant, yes, but the level of pain fluctuates. That is not fair – isn’t that like moving the goal post? I think this game is rigged!
Ok seriously - where is the doctor who inspired this character?
Surprise! I’ve been living with the wrong diagnosis for about 10 years! Wow – that news hit me pretty hard the first time I heard it back in January after my second muscle biopsy.
My neurologist in Vegas finally got Kaiser in California to release my medical records – which is something my local doctors have been trying to make happen for about 4 years! My GP was floored when she heard we had the records as her office had tried and failed many times to obtain them. As my neurologist reviewed my past medical history relating to my muscle weakness he discovered something odd. I had been diagnosed with Inflammatory Myopathy by Kaiser, yet the muscle biopsy they did 10 years ago to confirm the diagnosis had been negative. He said there was no way I could get a diagnosis of Inflammatory Myopathy with a negative biopsy. As all my symptoms fit Inflammatory Myopathy, he felt Kaiser must have screwed up my biopsy. So he did what any other neurologist would do, he re-ran all the tests, the nerve conduction study (ouch), blood work and the muscle biopsy.
My appointment for the muscle biopsy results was about a month after the surgery. I had just about healed from the slice and dice they performed on my leg and was ready to accept a real diagnosis of Inflammatory Myopathy.I was even prepared to take on the steroids and their wicked side effects which would be the inevitable course of treatment along with physical therapy for Inflammatory Myopathy. My doctor took me into a consultation room to go over my biopsy results. He look dumb founded – not a look you want to see on the face of your neurologist. He said the biopsy results were once again negative. What? Blink. Blink. I’m not getting the punch line here. He said the biopsy showed no signs of inflammation therefore I don’t have inflammatory Myopathy. I sat there in actual shock. I had done the research, all my symptoms fit. All the things I was doing to relieve the pain in my legs fit with inflammation. I would take an anti-inflammatory and I had incorporated large amounts of blueberries (the natural anti-inflammatory) into my diet to ease my occasional discomfort. Was all this just a placebo effect because I thought I had an inflammatory condition? I just kind of stared at my doctor and he stared back with confusion and compassion – I thought he might cry. He apologized for not having the answers I was seeking even through it clearly wasn’t his fault. He said I needed to see a specialist either at the Mayo Clinic or UCLA. That there was no one in Vegas who could help me with my medical mystery, that he had exhausted all his local testing and consultation options. Not a surprise, Vegas is not exactly a medical Mecca – well unless, like one of my friends said, “you need a boob job.” My neurologist referred me to a neuromuscular specialist at UCLA (my insurance does not cover the Mayo Clinc – unless UCLA can’t figure out what is wrong with me first. But if UCLA can’t solve the puzzle, I’m pretty much screwed as another friend told me in only a way he could and I would have to agree with his observation).
So I have an appointment at UCLA set for May 7 – 8. There will be questions and needles and tests, oh my! They have already told me they will do a nerve conduction test during this visit. This leads me to suspect they will re-do all the tests including the muscle biopsy. Fun times, but I can’t live with the wrong diagnosis – clearly. And I can’t live in mystery because I’m getting worse. Each day is a struggle and with this newest symptom: all over pain, it is getting even harder to make it through each day and night. At least I can still type – I wish I could do more work from home. I really dislike feeling so useless and like I’m letting my team down. I kind of feel like I’m just struggling to make it through each moment until my appointment at UCLA, but it just the first appointment and I know I can’t expect answers or even relief out of that visit. All I can expect it to be is the first step in the re-diagnostic process. Or the doctors first glimpse at their next medical journal article.
Anyone have a contact at House or Mystery Diagnosis who I can sell my story to in exchange for them paying my medical bills?
The tension headaches have resurfaced. I had an around the clock headache for about 4-5 months. It comes and goes now and the doctor has me on around the clock medicine to get me through each day and night. Along with the headaches has come all over body aches and pains – this is a new and not fun symptom. The pain keeps me up at night and keeps me from concentrating on things. I have finally resorted to taking a prescription sleeping pill at night just so I’m not sleep deprived. The sleeping pills have been working, for the most part – but last night and today were another fun filled trip to all over body and headache pain land. The meds help most of the time, meaning that when they do work they make the pain tolerable, but it has been months since I have experienced a pain free moment. I have to take each day at a time and sometimes each moment at a time. Here are the problems with treating the symptoms – it’s not a cure and the meds are so strong that if I take enough to make the pain go away I’m so zoned out I can’t do anything either. So my choices are pushing through the pain, which I do most days or taking so many meds that I’m a zombie.
The doctors here are at loss. They have no idea what is wrong with me or what to do next, so I have been referred to a neuromuscular specialist at UCLA. More on exactly why I’m going to UCLA and talks of the wrong diagnosis at a later date.