Pain from Morton’s Neuroma and Plantar Fasciitis= Good Times!

Colorado Pre-Surgery

Colorado Pre-Surgery. I love my crazy socks. Since it was a slow day I decided to pull up my pants and take a pic.

As you already know, the pain from my nerve damage is back! Because I had a “break” from it, I now realize how horrible it is and that I had become somewhat “accustomed” to it. Not only do I have this excruciating pain in my toes and balls of both feet, but I also have pain in my heels which I am assuming is Plantar Fasciitis (probably from the way I now walk because of the pain and not being able to bear my weight on certain places on my feet). I do not really care what it’s called, it just hurts! Lately I’ve been at a “9” on the pain scale (and I have a high pain tolerance). The reason I won’t give it a “10,” is because I’ve experienced pain on a whole new level numerous times since I’ve had Lupus and just when I think that pain could not be any worse, something else will prove me wrong. To think that pain can be any worse frightens me a lot!

Recap: I first experienced this very intense pain in my left foot somewhere around 2006. I just dealt with it because I had become used to going to different PCPs and Rheumatologists for answers to new symptoms and pain that began to introduce themselves into my life and was usually brushed off. Their answers were usually, “I don’t know,” or “It’s probably just the Lupus.” Really? That’s it? Not only did they not know and go on to the next subject but they wouldn’t even try to offer any allevement. It was a waste of my life and money so I would only go to my doctors for their follow up appointments or if something was exceedingly bad. I figured that there was nothing that could be done. I was referred to a Podiatrist who gave me a few options and not wanting to undergo surgery, I opted for the horrid cortisone shots. Not only was it the most painful shot I’ve ever had in my life but it didn’t work after the first shot! It was a “miracle” shot until a month later when the pain returned. The next two shots didn’t work at all so I just tried to deal with it as the only other option was surgery. Around 2008, I had the same type of pain in my right foot and it was worse than the first Morton’s Neuroma. I dealt with it, gritting my teeth and making tight fists as I dug my fingernails into my hands. I had heard that if another part of your body was in “pain,” then it would take away from other pain one may be feeling. (It didn’t help). I didn’t have to be on my feet to feel the pain, even if I was sitting in a chair, or just laying in bed, the pain was always there. Many nights as I laid in bed, I couldn’t remember how it felt to not have this pain. I wished that I could have just one night without pain and promised myself that I would cherish every second of it. When it became much more than I could bear, I went back to the Podiatrist, finally willing to have surgery on at least the right foot and eventually later I would do the same for the left. The surgical plan was to cut the nerve in my foot which would leave my foot numb. I was exchanging pain for numbness. Not the most favorable plan in my mind but I just wanted it to go away!

I waited until the following year to schedule the surgery due to work. They didn’t have anyone to cover my position while I was gone, so I waited until I just couldn’t stand it anymore and told my manager early in the year (late January) that I needed to schedule this surgery as soon as possible. She told me that she was using her vacation time in March and that I would have to wait until April to schedule it. I was pissed! I could not believe that she would make me wait another three months when she knew I had been dealing with this for so long! In April when it was time for surgery, I was extremely grateful that my mom came to help me for two weeks since I was living alone in Colorado. All of my friends who said they would be there to help didn’t visit or even call to see how I was doing except for one person who brought me flowers after I returned home from outpatient surgery.I really appreciated her thoughtfulness. I lived on the second floor of an apartment complex which made it difficult to go out to buy groceries or go to doctor appointments. I couldn’t drive (something I did not think about until after surgery) so my mom’s willingness to fly out to help meant so much to me. I didn’t even have to ask her, which I wouldn’t have because of the inconvenience and the price of airline tickets.

Chances of the surgery being a success was 90%. Pretty good, right? Well I fell under the other 10%. So not only is my right foot numb and tingly but it still hurts like hell! One morning within the first week after surgery, I woke up in so much pain that I broke down and cried. I have only cried twice from pain in my life (excluding when I was a child. I’m sure I must have cried then) and I was also way beyond frustrated. I couldn’t stand up and was on the ground. I had to use the bathroom but didn’t want to ask for help and refused my mom’s offer as I was determined to do this by myself. It was harder than I thought as I tried to drag my body on the floor towards the bathroom. Then when I got to the toilet, I could not get up. Finally I let my mom help me. I’m very stubborn and proud, I did not want to admit “defeat” or that I required assistance to do something so simple at the age of 35.

I had mentioned the pain in my feet to at least two different PCP’s, two different Rheumatologists, a Podiatrist, and an Orthopedist. Because no other options were mentioned or it took so long for new options to be introduced to me, I came to the conclusion that this was my lot in life. I thought that nothing could be done about it, “it is what it is,” and I would just have to deal with it. Now that the pain has returned after it miraculously disappeared for three months, I realize to live like this is absolutely asinine! Something needs to be done and I’m over it! I mentioned it to my nurse last Friday when she was in my department using our fax machine. She told me to send a message to my doctor. It was good that she was there and told me to email him or I wouldn’t have. She made me feel like this is a legit thing to discuss more in depth with him. She asked if I had heard of Gabapentin. I then remembered that I did. When I was still in Colorado, my PCP finally mentioned it (after years of telling her how bad the pain in my feet was). All she did was refer me to a Podiatrist and then an Orthopedist. When she mentioned Gabapentin, she wanted me to first try two other medications before talking more about it. I was angry that she failed to mention anything (even the other two meds) earlier. I was thinking, “Are you kidding me?” Because apparently there was something out there that could possibly help me and “only now” was she mentioning any of it. I tried the other two medications first like she suggested hoping that it would help but began to experience more pain. I left a message with her receptionist about it and she called me back to say that it was probably one of the new meds and told me which one to stop taking. I continued with the other but stopped that one on my own when it wasn’t working either. Somehow the option of Gabapentin had slipped my mind. It was probably because I was depressed and also stressed out at work and in my home life.

So on Friday I emailed my current PCP and asked him what he thought about Gabapentin. He emailed me back and told me to set up an appointment to see him to discuss the options of either Lyrica or Gabapentin. I tried to research both of them but was overwhelmed with the information, pros and cons, and side effects which I may or may not experience. I figured I would just speak to him as soon as I can get an appointment. I am looking forward to my next visit with him hoping that I can get some relief from at least the nerve pain. I’m also wondering if the pain I sometimes get in my left shoulder that lasts 3-5 days is some kind of nerve pain as well. So far none of my doctors have an answer for that one.

My PCP is leaving our clinic (it’s so convenient to be located on the same floor right next to his) and I really like him. He will still be practicing but will be on the other side of the island. If I was on the mainland, the drive would not be so bad, however on an island with one main road where one accident can majorly impact traffic on the whole island and just the way that traffic flows, it’s not an ideal drive (especially since I do not like to drive). However I am willing to drive to see him because he knows me, my condition(s), listens intently, answers my questions and if he doesn’t know the answer he will either consult other doctors or refer me to a specialist who may be able to help, and I am comfortable to tell him anything. I don’t want to take my chances with another doctor. I told him on our last visit that I wanted to keep him as my doctor if it was okay with him and not to scratch me off his list. He said that was fine, he wasn’t going to drop any patients that still wanted to see him, and that he learned a lot about Lupus from me. I told him he would be a pro soon enough. 🙂

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So You Like Pain?

I was thinking of pain this morning as I opened my eyes to wake up from a longer night’s sleep than usual. I’m happy that I have been able to fall asleep earlier than I have become accustomed to.  I don’t like insomnia. I enjoy sleeping, I enjoy dreams, no matter what type. They’re my entertainment. I could feel it in my lower back again, radiating around to the front. It could just be my back even though it feels like I have been crushed between metal. I don’t even want to think that it could be my kidneys. It’s probably my back.

Wood Roses in bloom

Wood Roses in bloom

I thought about how there are different types of pain. The title for this blog came from a “Zine” that we had to create in groups of about four students in one of my college English classes. We all liked tattoos and body piercings so we worked on a zine which was about “pain,” which we all knew was really no pain at all. Just a little “pinch” or reminder that we are still alive but unrepresentative of what real pain is, with a “present” of a tattoo or piercing at the end. If I only knew to not take anything in life for granted. Every single sensation, no matter how “ordinary.”

I also never knew that there are a wide array of different types of pain. Inflammation of any and all joints, various back pain, gallstones, nerve damage in the feet, excruciating headaches, neck & shoulder pain, a spinal tap gone bad, and I’m sure there are more that I’ve missed. Pain where we never knew there could be pain. Sometimes if someone I’m close to asks how I’m doing while I suffer in silence with my pain, I’ll say something like, “If you cut me right above the waist and cut my head off, then I’ll be fine.” The only place I didn’t have pain that day was my mid body. They laugh, we don’t have to talk about it anymore, and we go on to our silences or whatever else we may have been doing. It works for both of us. 🙂 Today we can keep my legs, just get rid of anything above my belly button. 🙂 What intrigued me was that not all pain medicine works for the same thing. I did not know this. I think it’s a gift not to know this. Ignorance truly is bliss.

You would think that the stronger the pain medication, it should be able to help with everything up to that pain level, right? Wrong. Pain medicine that I usually use for my back doesn’t work for inflammation of joints, nerve damage, or headaches. It’s also a hit or miss, like everything else. Sometimes it works, sometimes it doesn’t. If it at least alleviates the pain and hopefully knocks it under that pain threshold that makes it “tolerable” is preferred over the suffering. Ibuprofen, while I was taking it (before this “Lupus Hissy Fit” happened), actually worked for my pain due to inflammation; while Tylenol & pain medicine didn’t work).

The bad headaches, forget it, the only thing that I found that works 80% of the time (don’t get me wrong, I’m extremely and eternally grateful that my Neurologist gave this to me) is Relpax; however Sumatriptan helps 60% of the time. But boy are those expensive and my insurance will cover it once per month and I can’t afford to pay over $200 out of pocket for 6 pills. So I have to pick and choose which headaches I will take a pill for or I will run out and have nothing, or Sumatriptan until I run out of that. Sometimes I’ll get these headaches everyday. If they’re “tolerable” headaches, I just take a Tylenol if I must.

There is nothing for the nerve damage in my feet (Morton Neuromas). Boy do they suck big time. At least I’m not dealing with that right now, I think I mentioned it before, but it was strange, since December’s flare and medical issues, my pain from the nerve damage has gone away for the first time in about seven years. I had to actually count to guesstimate as I don’t remember how long it has been. My Podiatrist tried Cortisone shots in my nerves. He said my options were: Cortisone shot, surgery, Orthopedic shoes. I knew better shoes weren’t going to work because I was in tremendous pain as a lie down in bed wanting to sleep but too much pain to be able to think about anything else. And there was nothing wrong with my shoes. I never wore heals. I loved my boots, Dc Martens, Diesel, Converse, and other shoes. I eventually bought inserts but that didn’t work either. I finally found some really good inserts (I should’ve written down the name and all of the product information so I could find another one now that I need a replacement) as they are very comfortable. The Cortisone shots were hell. I don’t mind needles at all, but those shots scared me because they were the most painful shots I have ever had, seemed like it took forever to administer, and sometimes were more sore than the nerve damage. Or at least that’s what I would be thinking at the moment of injection. The first shot was a miracle (after about an hour and the pain from the shot started to subside). I lived “pain free” in my foot again (at this time I only had it in my left foot) and I was quite happy about that. At that time in my life it took me a long time to report anything new to my doctors, especially if I didn’t have an appointment. I had become so accustomed to doctors shrugging and either saying that they didn’t know or “it’s just the Lupus” that it was a waste of my time to ask. I already knew the answer. “It’s just the Lupus.” And an answer wasn’t exactly what I wanted. I wanted the doctor to fix it and make it go away. So I had been walking with the pain in my foot for about two years before talking to my PCP who gave me a referral to see a Podiatrist. Unfortunately for me, the shot wore off in a month. It’s apparently different for each individual but he had said it would last some people up to 6 months. I was hoping I would be amongst those people. I wanted to avoid surgery so the shots seemed like my only viable option (other than just suffer, which wasn’t acceptable anymore). My Podiatrist gave me the second Cortisone shot and I was devastated when it did not work at all. When I called him to report this he said that if I wanted to try again I would have to wait a month. A month! When I actually thought about how long I had to suffer before we could reattempt getting rid of the pain (which was not guaranteed), it seemed like eternity! I was so frustrated! I eventually got the third shot but was advised that if this didn’t work, he would not suggest doing it again but would suggest surgery. I didn’t go back to him for a few years and just learned to adapt to a new pain, one that I liked least of all and was constant. I finally went back after developing what I felt was another Morton Neuroma in my other foot and after years of that pain as well, couldn’t stand it anymore and made an appointment for him to officially diagnose it and then figure out a surgery date for that foot which was way worse than the first. It was reported that the surgery had a 95% rate. I was hopeful even though “exchanging numbness for pain” wasn’t reassuring or even a “fair deal,” but I just wanted to get rid of the pain and if that meant being numb, then that was fine to me. It sucked when I fell into the 5% group and now had pain, numbness, tingling, and shooting nerve sensations which didn’t “hurt” but felt like I was being shocked. So nothing worked for alleviating the pain in my feet (except getting “sicker” and having to deal with new diagnoses and health issues).

So ask me if I like pain. Absolutely not!

Two Wood Roses

Wood Rose

Wood roses are very interesting to me because they’re just… “different.” I never even knew that they bloomed like a flower (the first photo of the yellow flower). I always thought that they looked like “wood” until a few years ago when I wanted to photograph one so my stepfather took me to a place he knew that they grew and I took several photos.