Today's post is going to looks directly at the random and decadent display of symptoms I have had on my journey that are all interlinked and some that you may get all too often as well. Some of my symptoms have been around for years, especially the most common ones, such as fatigue and stiffness, but then some new ones will appear and it is ever so difficult to differentiate between the ones caused by the disease and ones that are not. For example there have been many times I have come down with a cold and not known I was getting one as the symptoms are so much like Lupus that I have been unaware. As always I will only state here my experience and I am not a doctor....so I urge you, if you are experiencing anything new please book in with your specialist or GP! Better safe than sorry.
The Lupus Headache
The Lupus headache is somewhat of a contentious point if you look online. Some sites list is as an actual symptom of the central nervous system involvement, some list it as a general symptom and then others I have found simply dismiss it all together. My experience is that lupus headaches are very real, at least for me they are and they tend to come when I am either about to have a flare up or first thing in the morning during a bad day. I also find that when the headache comes the memory loss and inability to find words comes back....I presume this is all part of the dreaded brain fog.
I find they are not your normal headache, not like the kind you get when you are dehydrated or stressed out. For me it is a dull throbbing pain, starting in my forehead and working its way to the back of my brain....it makes me feel like a zombie and cause dizziness and nausea. The closest I can come to describing it is a migraine but for me, not quite as bad. Now dizziness and nausea are common symptoms of Lupus and other connective tissue diseases so that is understandable, but I did not know about the headaches until meeting and speaking to fellow fighters about their symptoms. So may had the same thing happening, maybe during a flare up, after being in the sun or when they are stressed, that I had to ask my doctors.
Combating the headaches is tough, especially when they re first thing in the morning. I really find that there is little to do other than wait for them to go away. I have tried drinking more water, painkillers etc, but nothing seems to shake the dull and sluggish ache apart from time.
Paresthesias......or odd skin sensations.......
I have an issue with y shoulders and neck that has been bugging me for the past couple of months. I will get a pain in my shoulder blades that is often so bad I cannot sleep and then this will be accompanied by the feeling of bugs crawling under my skin. It is a really horrid feeling and one that has been so bad that I have had to get people to check my neck to make sure that there is nothing there. Turns out that this sensation along with pins and needles are called Paresthesias, with the specific bugs crawling feeling known as Formication.
This is one that I have not yet had the chance to mention to my new rheumatologist, so as many of us have had to do, I have been left looking into it myself first. Now I have mentioned many times that I trust very little medical information online unless it is from certain trusted websites. It appears that everyone thinks they are a doctor and I don't need any more stress in my life. This symptoms does seem to be one that some people have mentioned in relation to lupus, but more commonly it appears with Fibromyalgia.....well according to the little I could find out about it. This is a prime example of a symptom that I seemingly have no help with util I get some medical answers, but it is one that causes me quite distress. So I am stuck in the limbo period between being seen by my doctor and worrying about it.
Stomach symptoms
Here is one of my symptoms that is seemingly not linked to the lupus, but one that does make me think there is an odd correlation going on. So I have had IBS for many years, I am not afraid to admit it and neither am I embarrassed to talk about it. IBS is a common stand alone condition that causes irritation of the bowel, it causes bouts of constipation, diarrhea, bloating and stomach cramps. Now this is by far the least of my problems in the grand scheme of my health, but recently it has been ten times worse at the same time that my flare up kicked in.
Looking back this seems to be a common pattern. I get a flare up of my connective tissue symptoms and the IBS kicks in. Now there is no link that I know of between the two and gastrointestinal involvement in lupus is less common that skin and kidney involvement, but this does seem to me that the lupus is fueling the IBS. This is something that I have never been warned about. No one has said to not be alarmed if during a flare up my IBS gets worse, so this is something I will be mentioning at ,my next appointment as for me, there appears to be a clear link.
I don't know about anyone else, but I have a whole list of symptoms that I have no idea whether or not they are connected, but that seem to work alongside the lupus to create a storm of fun....that is sarcasm right there...sorry about that. I know I am not the only one that suffers with the unknown and the little answers that we ahve to go alongside some of our illnesses. Quite simply there is not enough research being done to give us all the answers we need...this is why we all need to band together to create a better understanding.
