I suffer from a lot of different symptoms of several different conditions. In 2013, I was diagnosed as fibromyalgia and told I had symptoms and bloodwork that indicated rheumatoid arthritis (RA) without the rheumatoid factor. Almost two years ago, I got a positive ANA pointing to Lupus SLE, then another positive ANA confirmed the same result more than six months later. I was told I have mild lupus and possibly have some symptoms of Sjogren’s syndrome. I was previously thought to have seronegative RA by a now retired rheumatologist treating the fibromyalgia, which probably should have been down as having seronegative lupus or Undifferentiated Connective Tissue Disease at that time according to the new doctor.
I was told that those are common before symptoms progress and ANA tests eventually turn positive. Basically, my symptoms have always matched up more to the lupus than RA and just came on slowly. It may have seemed like RA in the beginning with joint swelling but more mysterious symptoms would come on. I didn’t develop a positive ANA until after a few years of progressively worsening symptoms and strange things being thrown off in my bloodwork. Things got worse over time with the low platelets and other things that would be off just randomly.
My immune system isn’t very good, and I get sick easily. If I were to have a flare, it would be hard to fight off the illness because although overactive, my immune system is too busy attacking the body with lupus that it doesn’t attack other illnesses. I can also get a flare if I get sick enough. I remember for years I had unexplained fevers and rashes, followed by so many tests and scans getting nowhere. Low platelets, repeated pleurisy, joint pain and swelling were very bad. When I finally had a doctor explain what was going on, I was upset that this could get worse and attack my organs, but things finally started to make sense.
Before I had figured out what was wrong, I ignored my pain due to feeling disappointed because doctors did not know what to think. They couldn’t find the reason for why these things were happening and strange new symptoms started coming up. My symptoms had no explanation for many years before the diagnosis because of the lack of bloodwork proving them, but they were getting worse. It made me feel even worse when there was no explanation. The symptoms were starting to take over my life, and nobody knew why. When I found out the bloodwork pointed to lupus SLE, I finally had an idea of what was going on. It made sense why I was so sick all the time. I started on Plaquenil twice a day, which has helped a lot of my symptoms but I sometimes need things for inflammation. Without it, I has so much pain in my joints all the time. It has lessened quite a bit with that. I was told I have fibromyalgia in addition to this, which can be common. Some symptoms go along with lupus while others are fibromyalgia, and some overlap.
I have also had chronic migraines for over a decade and suffer from bouts of cluster headaches sometimes too. I’ve had a lot of failed treatments and allergic reactions that were very severe to them. I have a lot of nausea and vomiting associated with them. I have had so many tests for this too and no answers. Sometimes a lot of people realize that I’m sick because it becomes pretty obvious, especially if a migraine hits. Most of the time, people are supportive and helpful. However, sometimes I wish that I could just hide because I don’t want all this attention on me at all.
It isn’t easy to deal with naysayers who wish I would just give up on everything I set out to do because when I want to keep going, I don’t need discouragement. I need encouragement. Sometimes the naysayers aren’t always trying to be mean, but they just don’t understand what it’s like to fight through pain and chronic illness. I constantly am asked why I am not at the ER if I get one of my typical migraines that make me sick. Basically, it’s because I would have to move in if I went every time I got a migraine. As anyone who has ever had to go to the ER with a migraine knows, that’s not feasible or affordable! Nevertheless, it still hurts on top of all pain when someone doesn’t think I can do what I say I can do. If I can push myself through what I am doing that day, I will because I know I can. I feel like discouragement creates a whole new problem with pain. I try not to let it get me down because there is enough I have to go through already with all this.
I have a lot of treatments I take for all of this. I have to take Zofran, Neurontin, CoQ10, and sometimes occasional IV magnesium sulfate and fluids treatment when things get bad enough. I also have rose colored sunglasses that help. Very specific tints help with my light sensitivity to help me function more. Aqua and a specific rose colored tint help the most for me while other tints made it worse. Cluster headaches are more difficult to find anything that works, and I fortunately do not have them as often. Cluster headaches are rough when I get the cycles and bouts of them, and they are even more debilitating.
I am very tired and in pain a lot with all this going on. Neurontin and trigger point shots of Lidocaine have also been used to treat fibromyalgia, as well as, massage and alternating heat and ice. Having fibromyalgia makes my muscles hurt. Lupus makes my joints swell, and gives me certain kinds of rashes, fevers, increased sun sensitivity, and health issues with bloodwork. I have had both the malar rash and red rashes over my swollen joints. Both can also contribute to migraines, so that’s the only possible explanation I have gotten for that. It’s a lot when they both have symptoms at once.
I have a lot of other things to deal with besides multiple health conditions and it gets challenging. I try not to listen to anyone who says anything discouraging because getting discouraged is exactly what I don’t want to do. Sometimes it gets overwhelming from all the pain and frustration. Sometimes I find myself just hoping and praying to make it through the day. I just keep fighting through it. It’s like picking myself up if I were to fall down, and that is how I get through. It can be a lot to handle, and people have so many opinions on what I should do about this and that. I just have to realize at some point that it is up to me to decide the care and treatments. I feel the most comfortable with making informed decisions about any new treatments added to the mix. Some days, I just have to just keep the faith that I will be able to get through the day, and if I have to have time to rest or something, I take that if I need it.
I try to surround myself with as many positive people as possible. Online support and helpful information on how to relieve the pain is everywhere. What works for someone else may not work for you, but I take all remedies and suggestions with a grain of salt. With lupus, any lupus like conditions, and any autoimmune condition, it is so important to understand that there are a lot of supplements that cannot be taken with that. If I’m interested in a supplement I always check with my doctor and research it to see if it can cause any problems.
It’s important to pay attention when you get symptoms, and if your doctor is dismissive of symptoms that are definitely not normal and are really bothering you, try to get another doctor that will get to the bottom of things or give a second opinion. Definitely do not ignore it, especially if it gets worse. As for pain and illness, I take things day by day, or minute by minute if you have to. I rest when I need to and keep going whenever I can. I really strive to get through each day and do the best I can despite all this.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.