My journey to finally getting diagnosed with fibromyalgia continued the second I was officially retired from the military. Initially I was rated 80% military connected through Veterans Affairs. When I was first presented with this I knew some of the percentages were not correct but I could only fight for an increase once I was officially retired. So April 29, 2015 I called my local VA hospital and set up my first appointment. Earliest new patient appointment…….August 2015. Ugh!!!
During the summer the kids were with their mother in Missouri and my husband took a lot of trips out of town while they were gone. So I was home with the fur babies doing the housewife thing. Erik and the kids had a lot of the boxes unpacked from the move but there was still plenty left for me. Plus if anyone knows me they know I’m crazy OCD with organization. Plus I am a person who needs to finish something they start with no break. So I started unpacking and organizing what was left of the household goods.
The pain I was still going through was insane and I just brushed it off to the unpacking and lifting everything. After a couple days of unpacking and such I had to take a day to relax, which I don’t do because I enjoyed being a busy body. I slept in, ate something, took some Vitamin M (800mg Motrin, it’s a military joke), and was so exhausted already that I laid down and took what I thought was a nap. I woke up later that day. Thankfully Erik was out of town so I didn’t get the “you slept all day” look. The next couple days I was still in pain but was determined to get things done before Erik came home so we could spend time together that weekend. Whoop whoop he was tired from traveling so we relaxed all weekend.
Once I got all the packing undone I was now ready to be this Stepford housewife I always wanted to be. Not really but I did want to be able to spend extra time with the kids at school and have dinner and a clean house for the hubs to come home to. I did start doing everything around the house and who knew vacuuming would take a person down with pain. Vacuuming…..seriously vacuuming! With two dogs and carpet this was an absolute need. Cooking…..who gets short of breath while they are cutting an onion? Walking up a flight of stairs…..who gets so dizzy they almost pass out? Lifting a laundry basket….who doesn’t have the strength to carry a laundry basket 15 feet? Unfortunately all of these scenarios were me. I was too freaking young to be feeling like this doing simple house chores.
Now I don’t have a green thumb in anyway shape or form. I’m more of a serial plant lady killer. Yes, I’ve killed a bamboo plant before. One of the easiest to maintain plants and I killed it. This house had a great set up for me to plant flowers and start a small above ground garden. Mowing the lawn is something I actually enjoy because no one bothers you and you can just let your mind wonder. We had a decent size yard but nothing like the acre or more we had to push mow as a kid. It would take like two hours to mow and we did NOT have the luxury of self-propelled. We had put your back into it and push the mother trucker! Any who, it would feel like I had ran a marathon (I’m just guessing how it would feel, never participated in one) because my legs felt like noodles. I was out of the military a wooping two months and thought I was just out of shape already. Right??
Finally August arrives and I was actually excited to finally see a doctor. All this pain I was going through just living was way more than I could have ever thought of and wanted to find some answers. I arrived at my appointment the 20 minutes early like every person who has ever served in the military knows to do. I learned this day that in a VA hospital you don’t need to show up early. Showing up on time was actually early. I waited patiently for almost a hour until I was finally called back for vitals. By the time I actually saw the doctor I was in so much pain from sitting in the oh so comfy military issued chairs in the waiting room that I was seeing double. I thought perfect! I was actually feeling the pain when seeing a doctor and not the normal “I feel better now that I’m finally in seeing a doctor” that always happens. Nope. The first words out of her mouth when I explained the amount of pain I was in were “everyone has pain as we get older.” Insert imaginary eye roll. Great another freaking doctor who thinks I’m making this shit up. I tired again to explain everything in detail. She gave the sigh that really said fine I’ll do something to make her feel better or like I’m actually doing something for her. So she does the normal ordering x-rays and blood work. I then schedule my follow up and swing by the pharmacy for my first VA issued medications. Anyone want to guess what it was??? Yep, Vitamin M.
Here we are again at a follow up appointment from x-rays and blood work. I already knew what was going to happen because this was not my first rodeo. Was called back and sat in the patient room for about 20 minutes before she came in. The normal 20 minute wait while the doctor actually looks at your medical records before they come in to talk to you. First words out of her mouth were….can anyone guess????? Anyone??? Bueller? Bueller? Yep, nothing is showing on your x-rays and your blood work looks fine. She decided I to prescribe me gabapentin and oxycodone. At this time the VA was starting to be under scrutiny for using oxy as a “fix all” for veterans not knowing they were creating drug addicts. I do not remember the exact amount she started off prescribing me but I was getting a refill once a month. Which sucked at first because I actually had to go into the doctor office to request this. So I’d go to the VA, sit for around a hour, tell her I needed a refill, and leave within five minutes of her walking in the patient room. Eventually she asked me to notify her through secure online messaging but most of the time there was a week delay between her actually looking at my message and then mailing it to me. Over time the VA started cracking down on oxy prescriptions; no longer mailing this prescription, limiting the amount prescribed, and drug testing those who were prescribed the medication. Pretty much I was starting to feel functionalble and boom back down the rabbit hole.
About the normal six-week wait for a referral I received a call from physical therapy. My doctor kinda forgot to let me know she wanted me to do physical therapy. Hmmmm thanks doc! Even though I was extremely annoyed because I was again doing something that had little to no results of relief. What was different this time was the Minneapolis VA was in the beginning steps of a Pain Management Clinic. My initial appointment was with a woman who was five foot nothing 100 pound nothing. Now I don’t judge anyone since my mom is five foot nothing and would beat my ass! She was the sweetest person ever and was incredibly patient with me. At this time my pain was so bad in my neck I could barely turn my head left. She gave me ‘a hey dumbass’ lecture since turning my head left while driving was kind of important. Then she jumped up on the table behind me and pushed down on my head. It was a moment no person could ever forget. Many times before when this was done my left arm would go numb so that is what I was expecting. The second she pushed down I have never in my life wanted to throat punch someone so bad (there was one time while active duty when it concerned the safety of my husband but that’s not fibromyalgia related). The pain was so bad she had to hop down from the table and grab a trash can for me because I felt like throwing up. We will just say that was the last thing she did to me to create my treatment plan.
My treatment plan started with physical therapy and chiropractic/acupuncture. I wish I remembered her name but my physical therapist was so awesome. She was patient with me but pushed me and for the first time in at least a year I could check my blind spot while driving. My chiropractor started out adjusting my upper back and doing acupuncture in the general pain relief spots. I have learned the military/VA need to find a way to clarify which acupuncture will be used. My Minneapolis VA did the normal strategically placed needles while I have learned Georgia gives you jewelry in your ear acupuncture. There is a HUGE difference. Especially for someone who is allergic to nickel. I think I forgot to mention in my post about my military time of going through everything they did attempt the ear jewelry. The very first time she did it I literally felt like I was drunk because I was finally relaxed and in very little pain. I almost called Erik to come drive me home from work because it was such a drunk feeling. Unfortunately this was attempted two more times but ended up being painful, very painful. Strategically placed needles now that’s the shit!! I don’t care if you don’t like needles or believe in the voo doo crap, it works! I finished my physical therapy but continued my chiropractic/acupuncture care.
It was around the beginning of April 2016 when I had finally had enough and told my doctor I strongly felt something more was wrong with me than “everyone has pain.” I stood my ground and told her she needed to find out if I had fibromyalgia or multiple sclerosis (MS). For a year now I had been researching about my pain and no I was not being a Google doctor, I simply wanted to know why I was in so much pain. Also researched my VA benefits to see how I can get this claimed since these symptoms started in 2006 while I was still active duty. She ordered an MRI and was ready to scoot me out the door. I got the normal “do you have any questions for me?” This is when I told her just writing down in my medical records she thinks I may have fibromyalgia does not suffice for my military benefits. Her response was “oh you want to add this to your ratings? Is this even possible to rate?” I informed her I had to be officially diagnosed through a rheumatologist to receive my rating. Before she turned around to type in my request to see a rheumatologist her face was saying “this crazy ass bitch coming up in here trying to tell me how to do my job.” I may have been a crazy bitch but I was so done with the run around I needed SOMETHING.
Finally the day came to see the rheumatologist. I was in and out of there in maybe 20 minutes with a diagnosis of……….FIBROMYALGIA. She made the comment she was surprised this didn’t come up as a possible reason I was in all the pain over the years during active duty. Not one single doctor brought it up while I was active duty. She ordered some blood work and this is when I found I had major vitamin D deficiency. She actually called my regular doctor and had her prescribe me vitamin D2 and D3. If you remember when I was diagnosed with osteopenia my vitamin D was low. This makes me feel like this was another symptom that started long before I was finally diagnosed. It was just exculpated by being on the depo shot. The one thing I do know is my vitamin D levels are staying in the normal range while I’m taking the prescribed medications.
I continued my care with the pain management clinic until we left in 2019. Along with my chiropractic/acupuncture treatment I also went through occupational therapy, dry needling, some injection in my neck, and psychology. I was supposed to do recreation therapy but it was the winter and the cold weather is rough on my body. Plus we ended up leaving before it got warm again. What they have going on at the Minneapolis VA is something very good. Hopefully more hospitals can set up a clinic like this.
Now to the fun and very annoying part. Medication. I started out on gabapentin which did it job for the most part. Can’t remember how long I was on it but one day I stood up after getting something from under the kitchen sink and everything went black. It completely scared the shit out of me. When my vision came back I was pisst. Just what I needed another freakin symptom to add to the list for fibromyalgia. After about a month of this occurring I finally made an appointment to see my doctor. Turns out I had postural hypotension which is a rare side effect of gabapentin. On to the next medication. My regular doctor went on to duloxetine, which is generic for Cymbalta. You’ve seen the commercials and have probably heard about it. Nada. The pain came back. Next was pregabalin, generic for lyrica, and nothing. So my doctor wasn’t sure what to do and requested a one on one with a pharmacist to find a medication. This is when I met over the phone a girl names Lindsey. Not sure where she is now but I pray she stayed in the VA system because she did not give up on me to find a medication. We tried noritriptyline which a medicine for nerve pain. This actually worked for a while so there was hope but that went all down the drain when I woke up one day not being able to walk because it felt like walking on nails. I swear there was another medication but it’s not showing up on my prescription history. I remember joking with her the current medication I’m on was third time is a charm. Knock on wood, my current medication is desipramine and it is doing its job. When I first started taking this medication I googled what it was primary used for because Lindsey was shocked it was working. The first thing that popped up was its use for those who wet their bed. This was definitely not the issue but funny it worked. When I started this blog I googled it recently and now it is showing it is used for nerve pain and an antidepressant. Even my recent therapist gave me a funny look and asked why I was on desipramine. We had a good laugh when I explained it was not for bed-wetting but for my fibromyalgia. I always try to find the positive in everything because living a negative life is not good for the soul. Being able to make fun of a crappy card I was dealt helps to keep it positive. I do also take muscle relaxers and a non-controlled painkiller daily. On bad days I do have to take additional medicine to my daily dosage but does not always help.
Now the tough ones to talk about for me, depression and anxiety. These two I would say are the hardest to control and highest on the list of symptoms for fibromyalgia. I am confident enough to say I see a therapist. In Minnesota I first started seeing a therapist because I was having a very hard time transitioning out of the military. Maybe one day I’ll talk about it more but the time isn’t right at this moment. I did start taking an antidepressant, bupropion, generic for wellbutrin. From personal experience after switching to sertraline, generic for Zoloft, I do NOT recommend this medication. I was a super bitch on this and unfortunately it cost me almost four years I could have been happier more. Now remember I’m not a doctor but someone in nursing school informed me that bupropion is the worst medication for someone with depression and anxiety. Being on Zoloft was a game changer for me. I still have times of depression but man my anxiety isn’t near as bad as it used to be. Ask my husband and kids about my crazy anxiety. If they don’t say I was crazy you’re talking to the wrong family. LOL.
To end this blog post I want to give a little shout out to the Comprehensive Pain Center at the Minneapolis VA. The pain center was just starting out when I was being seen in 2015 but is incredible when we left in 2019. When construction was complete for the center more services became available such as occupational therapy, pain pharmacy, psychology, a chronic pain rehabilitation program, recreation therapy, biofeedback, and pain procedures/injections. ALL of these specialties worked together to create a master plan for your treatment. Best thing I have ever seen and many more hospitals should take note and learn from them. They even offered nutritional education and group classes such as yoga or tai chi. In addition to all this there is another mini clinic created where you can get basic pain acupuncture daily which I utilized a couple time and it was great. Except the one day I was not wanting to be social and an older man made an announcement he thinks young people nowadays are so rude being on their cell phones because I wouldn’t have an extended conversation with him. Sorry dude but not everyone is Minnesota nice.
Many more topics to write about to come!!
Go Fibro Yourself 