I was in an auto accident a few years ago in which I was rear-ended. I had immediate pain in my upper back, shoulder and neck. I was seen immediately and diagnosed with ‘whiplash’ and told that the bones in my neck were straightened as opposed to the gentle curve they should have due to spasming.
I have been on anti-inflammatories, serious narcotics/pain medication, and anti-spasmodics since then. The medications reduce my pain slightly, but do not make it go away. I hurt all the time – every minute of every day. I can only sleep for one or two hours at a time, and if I manage sleeping for two, when I wake up my lower back hurts so bad I can’t move (I used to move around a lot in my sleep, but now, whatever position I fall asleep in is the position I wake up in – I don’t move a millimeter. I’m not sure if my lower back pain upon waking is related to that or not. As a side note, if I try to do anything even slightly strenuous – laundry, unloading the dishwasher, etc., my lower back hurts so bad I end up flat on the floor.)
The medications I’m on make me so tired – that combined with my lack of sleep and the upper back/neck/shoulder pain have turned me into a zombie. I used to be healthy and active – I ran every day, had a very active lifestyle – now, I’m lucky if I can get out of bed and stay out of bed for more than a few hours at a time. My sleep loss has really effected me. I walk in my sleep now and do all sorts of scary things – I woke up last week standing at my stove with my hand on the burner and the burner turned on high. I also fall asleep at the drop of a hat. I used to toss and turn for hours before I could fall asleep. Now if I lie down, I’m lucky to last long enough to turn the page of a book. I’m also falling asleep doing things – like at my computer, or standing in the kitchen, etc. I tried going off some of my medications and that was worse. My doctor took me off the anti-spasmodic and at the time I didn’t even know exactly what it was for. My back just started spasming worse and worse and when I called him he told me what that medication was for and to get back on it right away. I hate living like this – I am missing out on so much. I feel like my kids lives have passed me by and I’ve only been able to watch them grow instead of being a part of it. I can’t work and feel like I’ve lost so much in losing my career - I loved my job, and took so much satisfaction and sense of accomplishment from it. Now I have to remember to pat myself on my back if I can manage to write a letter or remember to take care of a bill on time. Writing something like this takes days and I used to be able to type so fast and write prolifically, now I forget words and have to look them up or try to guess them and find them in the thesaurus and I type like a two year old. It’s like I am a totally different person than I was before the accident.
I have tried all the treatments my doctors have suggested over the years and nothing has helped significantly. I went to physical therapy for a year and a half during which they tried exercising and manipulation, hot/cold therapy, ultra-sound therapy, and traction therapy. I was told by two physical therapists that the work they were doing was only aggravating my condition. I had a tens-unit at home for about six months that brought some relief only while using it, assuming I could stay awake long enough. I’ve tried massage therapy, but the therapists who worked on me determined that actual massage only made it worse. They then tried cranial-sacral therapy which really didn’t help. I tried biofeedback and ‘graduated’, but never experienced pain relief from it. I tried to take a class in pain management but was told after the first class that my pain was too significant for me to get any help from the class and asked not to return. I tired acupuncture even though I am terrified of needles. The first time I went I actually got up afterwards to put my clothes on, realized that my back didn’t hurt and started sobbing. I had five whole minutes where I wasn’t in severe pain, and then it came rushing back. Every time I went after that, I had no relief, so I gave up. I also had 11 facet blocks, which brought minor relief, and I’ve had more trigger point injections than I can count. Nothing seems to help significantly and it is so disheartening.
The x-ray I had at the time of the accident shows the bones of my neck are ‘pulled’ straight from spasms. I had an MRI about three months after the accident and was told there was nothing wrong with me other than ‘whiplash’. However, looking at the results now, years later, when I finally have requested all my records, it says:
Mild degenerative changes at C4 disc, central canal and both C4-5 foramen patent.
Mild degenerative change C5 disk. Tiny central disc protrusion present without spinal cord or nerve root compression. Both C5-C6 foramen patent.
Moderate degenerative change C7 disc with loss of disc heat and hydration.
Central canal and both C7-T1 foramen are patent.
Mild loss of the normal cervical lordosis which may be due to muscle spasm.
I tried ‘googling’ some of these terms and it doesn’t seem like these results are ‘nothing’ – although it doesn’t seem that bad, either. One of the things I found said that someone had similar results and are now, years later, worse – that things kept getting worse over time, and I wonder if that is what’s happening to me. Lately I have had numbness in my fingers/hands, and that scares me.
I’ve had five different primary care providers and also seen four different ‘pain specialists’/ neurologists. One of the pain specialists said it was all in my head and refused to continue treating me. Another one was also a substance abuse specialist, and was more interested in seeing if I was addicted than in treating me. Every time I’d see a new provider, they were extremely attentive at the beginning, full of ideas of medicines and treatments that would make me better. After a couple months, when there was no improvement, they stopped listening to me, and just prescribed my medications each month, saying that one in every ten soft-tissue-damage-patients just never get better. I am now labeled as having ‘chronic pain syndrome’ and no one has explained what that even means to me. I’m almost afraid to look it up, because I guess maybe I think it’s just another way for my doctor to say it’s all in my head and I wasn’t depressed (which I have been because of all the pain and lack of quality in my life, etc.) or if I were stronger I’d be fine.
I don’t know if I just haven’t found the right doctor or the right treatment or if I am going to be like this for the rest of my life like everyone says. I feel hopeless. All my goals and dreams are gone, and I am lucky if I can just get out of bed and face another day of worrying about my health and my children and how I’m going to feed them or pay our bills – this isn’t living.
I am sorry to hear of your prolonged pain. It is certainly difficult to imagine being in pain 24/7 with no significant relief. I wish I could offer you some effective solutions. The results of your x-rays and MRI do not show much other than the loss of your normal curve in your neck and mild degenerative changes in your cervical spine. As these were done approximately 3 months after your accident, it is possible that your spine has had further degenerative changes. This could only be determined with repeat x-rays and MRI. Did any of the specialists you have seen suggest further testing? The baseline you presented with could be much different than what exists now.
As for the medications, you do have a cumulative effect with a varied dosage and type of meds used as well as a buildup of tolerance where the meds are not as effective as they were initially. Your doctors are right that soft tissue injuries are sometimes difficult to treat, the symptoms are not always correlated to the clinical findings of the tests done and can be hard to assess as time progresses.
I am sorry that you have not received any positive reinforcement or pain relief -- it must be very disheartening. I am not sure another pain specialist would be able to assist considering your history. Perhaps you need to be evaluated by a Pharmacology specialist who handles individuals taking the kinds./dosages of meds you are now taking and determine if it is the right approach.
Good luck ----
Thank you so much for the advice and kind words (both of which I'm in need of!)
How does one go about getting a pharmacology 'review' ?
Add to all this, I'm about to lose my health insurance. I'm hesitant to even try something new not knowing if I will have coverage.
I have an MRI referral from my doc, and will be curious to see what changes, etc. there are between the initial and the current.
I still can't help but think there has GOT to be something out there I don't know about - some treatment or something, that will help. My phys therapists both said that I need to stop the spasming cycle - but no one seems to be able to tell me what to do to make that happen. Frustrating.
You are in need of positive feedback! It is very difficult to keep searching for answers and always feel like it is a dead end. If you are able to get the MRI it might help provide some additional information that will help the doctors narrow down the diagnosis and provide needed treatment.
I do not know what type of insurance you have, but most companies have nurse advisors on call that you can consult regarding appropriate referrals to specialists. They can also help in determining whether your insurance will cover any type of specialist treatment.
It is one further avenue to explore and might also give you an opportunity to get additional support.
Having had the evals by different pain specialists, it is more difficult for a new provider to pick up where they left off, but hopefully there are answers awaiting you. Just keep things in perspective.
Get the MRI and proceed from there. If you are losing your insurance due to job loss, it is important to get the testing done before your coverage ends.
Keep us posted ----
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