Symptoms Galore!

I have been asked a lot over the years what all of my symptoms are with multiple sclerosis and lupus. I’ll be honest, I can’t keep track of all of them and I’m still learning the difference between MS symptoms and lupus symptoms. They overlap quite a bit. Let’s see what I can come up with:

First of all, both are auto immune diseases. MS affects the nervous system and I have the form of MS called Relapsing-Remitting MS which means that any and all symptoms come and go as they please. Systemic Lupus (and there’s a much longer official name for it) affects connective tissue in a systemic way and it can affect ALL of my body including my organs. Both are not fun. And as far as all of my doctors know (and believe me I have done the work to find this out), I have both. Good times. Both were very hard to diagnose because the symptoms are very similar to so many other body issues and in my case were diagnosed only because they went through a major process of elimination and my body had to freak out in some way to get the right kind of attention and answers. Plus lupus is known as the “Great Mimmicker”. Well that’s just awesome.

I’M ALWAYS FEELING A SYMPTOM

Yes. It’s exactly what I just wrote. I haven’t had a break of symptoms that I can remember in almost 10 years. It gets very tiring and trying on my patience.

MS AND LUPUS ARE SIBLINGS

They either are getting along really great and team up to affect me, they are arguing or they are competing for attention. Not kidding. They are their own entities.

UNPREDICTABILITY

That is the main theme of what I deal with moment to moment, at all times, on a daily basis, 7 days a week, 24 hours a day. This also focuses on different levels of intensity at all times and all symptoms come in all different kinds of combinations. I have no control over it. I can’t stress enough how unpredictable it is and this is not only very hard for me to understand still but it seems to be very difficult to comprehend if you are not going through it. What this really means is that I never really know how I’m going to feel at any given time. I will go through what those symptoms could be later on I promise. It also means I can’t make any plans that are written in stone. Not that anyone can but there are numerous times I have not felt up to doing something and I’ve had to cancel, or I’ve been somewhere and could only do some of it, or I’ve been somewhere and felt crappy and pushed through it or whatever. Sometimes I feel ok enough during the day. Sometimes I don’t. Sometimes I wake up feeling crappy but it will change and I can feel a bit better. But see better doesn’t mean I’m all better like a cold/flu better. It usually just means I’m feeling an “improved” sort of better and perhaps some symptoms have lessened. I can also try to do something to relieve a symptom and help me get some relief but that doesn’t mean it will work the next time and vice versa. Very frustrating. I think you get the idea.

FATIGUE

Now this is a biggie. Always different levels of intensity. To me there are bazillions of different types of fatigue. I’m also still trying to tell the difference between MS fatigue and lupus fatigue. Plus there are different levels of both. Or I could just have fatigue because I’m human and human beings get tired. Or maybe I have an infection fatigue. Heat Fatigue is a very prominent symptom I have from MS. So I have to be really careful of how hot I get. Plus I’m more prone to getting hot much quicker than a healthy person. And as you can guess the summers are hard. Air conditioning is my best friend. I’ve talked numerous times about wanting a human sized cooler or fridge that I can go into and out of when needed. What seems to happen is that I start running low on battery or it’s as if someone just hit the light switch and I run very low on energy and I start to have more symptoms like aches and pains and stiffness and heaviness. It also makes my head feel pretty foggy so it’s really hard to know that’s what’s happening at the time. All I know is that I feel awful and it’s very hard to have any gumption to do anything. I feel like a completely different person when I’m hot compared to when it’s cool. And then to really complicate things, I have a really hard time with lupus and its connection to the sun (to be discussed in a bit) and when I’m in the sun I’m suddenly really hot and low low low on energy usually and as I just told you I have a hard time in the heat due to MS so the MS starts overreacting and then both lupus and MS act up together. Ugh.

PHOTOSENSITIVITY

Different levels of intensity. Photosensitivity or sun sensitivity is a large issue with lupus. It’s as if I have an allergy to the sun. When I’m in the sun I have a tendency to get itchy, I can feel nauseous, I can feel lightheaded, my eyes can’t seem to take in all the light (apparently affects both MS and lupus in different ways but with the same symptom), I can feel achy, feel stiff, you name it. So I have to wear sunscreen all over my body regardless of wearing clothes or not. The UV rays can reach me through the clothes and still affect me big time. I need to wear hats and the more coverage the better. It’s also best to wear long sleeve shirts and longer pants and even socks and full covering shoes. Well great. So the clothes help the lupus but then I still might get overheated so now I’m starting to get heat fatigue and my MS gets affected. So there’s always finding a balance and nothing can feel perfect and there’s a lot of negotiating with the body. Nothing is ever perfect or happy.

ACHES/PAINS

Intensity is very important with this one. Aches and pains can be different and similar. They are hard to differentiate and there are all different kinds. They usually happen in my hands and arms but they can happen anywhere else like in my legs, back, or neck for example. Sometimes they’re really intensely bad and sometimes they’re just there. Sometimes they go away like the rest of them. Sometimes they affect my ability to move like walk or type and sometimes they don’t. I can get a lot of pain in my joints and the joints are affected by lupus. I just learned this. These are MS and lupus symptoms.

STIFFNESS/SPASTICITY/TIGHTNESS

Same theme: lots of different intensities. My muscles, nerves, tendons, ligaments, joints (you name it) get stuck or harder to move (in general). I can get this anywhere too. A lot of times it happens in my joints or with my muscles or my limbs. It affects my ability to move around and function in general but also my balance, flexibility and coordination. If I sit too long I get more stiff (anywhere). If I stand too long I get more stiff (anywhere). Or sometimes I don’t get stiff at all. These are lupus and MS symptoms.

TINGLING

Intensity does play a part. It’s an MS symptom. It all started with tingling on the bottom of my feet but it can happen anywhere and strangely enough I haven’t felt tingling on the bottom of my feet for a long time. Not sure why but I’m glad it hasn’t continued. It was incredibly distracting and annoying.

BALANCE

These issues aren’t as prominent but they do happen and are mainly MS symptoms. I really should use a railing when going up and down the stairs and I have to really watch my footing when moving, getting up, exercising, etc. Sometimes my balance is affected by how my muscles and joints are reacting too.

COGNITIVE PROBLEMS

These symptoms are hard to admit. They are the symptoms that affect my brain and ability to think, communicate, my memory, my concentration and focus and ability to recall. These are MS symptoms. They also have affected my ability to write sometimes and get the right words out. I can’t do math and work with numbers as well as I used to. I can’t quickly recall. There are times I slur. I can be having a conversation with someone and completely lose track of what I was talking about and lose myself. I am affected by loud music and by too much light. I get overwhelmed very easily from overstimulation (and there may not be much going on). There are times I can get really confused and this all takes a lot of patience.

DIZZINESS/LIGHTHEADED

Oh yeah. I get this from time to time and sometimes I just can’t describe it. I don’t think it’s even the best way to describe it but I feel loopy. There really are not enough words in the English language to describe a lot of this. It’s just what it is.

DIGESTIVE ISSUES

I’m gonna be honest here so bear with me and it might be TMI but we’re all human and we go through these things. These are mainly lupus symptoms with some MS sprinkled in. They include nausea, acid reflux, what I call just an upset stomach, gas, constipation, diarrhea, bloating, not hungry, too hungry, etc. Sometimes these cause fatigue too. Some of my symptoms have been caused by food allergies (that I just learned all about in December 2011) and I’ve also had problems with small intestine bacterial infections in the past which required mega rounds of digestive antibiotics (basically a detox). Very unfun. A lot of these issues have calmed down but I still deal with them. In fact, it was severe nausea and vomiting (I DON’T USUALLY VOMIT–to be honest) that stopped me from working in June 2010 (all the other symptoms I somehow pushed through like a crazy person) and lead me to the emergency room only to find out I had toxic liver levels (liver was affected by a major lupus flare I found out in August 2010) that lead to the severe nausea and all. I tell ya. I don’t EVER want to repeat that. Awful. Just awful.

ECZEMA/SKIN RASHES

Any redness or dryness of my skin and even acne can be caused by the sun and/or lupus. I gotta be really careful with the sunscreen I use and the lotions/moisturizers. Plus I have rosy cheeks which apparently is not a good thing according to my doctor because it means I’ve been in the sun too much. Well, I like my rosy cheeks but what do I know? And I gotta be careful with skin rashes because they can lead to staph infections. I tell ya. The stuff I deal with.

DRY EYES

Yep. I have very dry eyes. That is from lupus. Not comfortable at all and it stops me from being able to wear contacts which I would love to be able to wear again like I did a long time ago. Sad.

DRY MOUTH

And again. The dryness comes in. Both dry eyes and mouth are connected. This one isn’t too bad but can affect me.

MOUTH/DENTAL PROBLEMS

I had no idea this would be affected too. I can get gum inflammation and my teeth can hurt and I can get mouth sores. These are lupus symptoms.

HAIR LOSS

This doesn’t happen too much anymore but it can. I have actually had a lot of new hair growth since I’ve been in recovery since June 2010 thank goodness. Apparently my hair line was receding for years because my hair line has completely changed. This is a lupus symptom.

PRONE TO INFECTION

No doctor has ever completely confirmed this and said it directly to me but it has proven to be true time and again that I am prone to getting upper respiratory infections, sinus infections, small intestine bacteria infections, etc. I don’t get to have the privilege of avoiding “sick bugs” just because I have two diseases. Seems to me like that’s totally unfair. I mean, don’t I have enough?

FEVER

This can happen with lupus and seems to happen with me when my body is already inflamed. I gotta be really careful with this because if I get any higher than 98.6 (my normal is usually 97.6) then it means I get warmer and here comes my MS issues with heat fatigue yet again. Plus I have to wonder if I’m coming down with yet another infection of some sort. Very irritating.

FEMALE SYMPTOMS

I’ll name this with a polite term. But yes, all of my female symptoms act up due to lupus and MS because apparently they weren’t enough fun anyway.

BLADDER SYMPTOMS

I don’t get as many of these as I hear others with MS might have but I can feel like I have to go (again probably more TMI than you’d like but I’m gonna be honest) and then not be able to, or that I have to go a lot and run to the bathroom too much or it wakes me up in the middle of the night.

SLEEP ISSUES

Of course my sleep has to be affected. I can be having symptoms that wake me up from discomfort, or not be able to go to sleep in the first place, or wake up a lot during the night. These are MS and lupus symptoms.

LOTS OF ALLERGIES

No doctor will tell me that I have environmental allergies due to having MS and lupus but I’m not surprised I have them. They still happen. I think it’s that I’m already really physically sensitive so why not add more. It all fits together to me.

MALAISE/OR AS I LIKE TO CALL IT “FEELING BLEH”

Come on. You know what it’s like to feel “Bleh”. There is no other term for it. I just don’t feel good. Can’t describe it any better than that. It’s “Bleh”.

DEPRESSION

Yes, I’ve gone through that. Not only is it an actual MS symptom but I’d be surprised if I didn’t go through depression issues. It is VERY HARD to have a chronic illness but now that I have two it’s even more of a challenge to deal with and to try to get through life and make an attempt at having a normal one.

I have a feeling I’ve left some symptoms out (hard to believe I know) and this really is a general overall view of my symptoms.

So how do I combat all of these? I have no idea. I have a lot of things I try but sometimes I gotta let them play out. I’m sure I’ll Blog about them at some point but right now my hands and arms are yelling at me (aching and inflamed) and had better stop.

Hopefully this helps you understand me, chronic illness, and MS and lupus more. Plus these symptoms are different to everyone with MS and lupus and can feel different than what I talked about. It’s very confusing. It actually helped me just to write about it. Right now I hope I don’t get anymore symptoms because I don’t know if I have any room for more.

You hear that body? That’s enough!!

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Categories: Uncategorized | 8 Comments

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8 thoughts on “Symptoms Galore!

  1. Adrienne

    so sorry šŸ˜¦ you are very brave to put it all down to see and process. I am amazed at your strength.

    • nahleen

      Thanks so much Adrienne! Yeah I’ll admit it was much easier to write it in the moment. I’m way too used to describing my symptoms for business reasons (which is hard enough) but now that I’m personally putting it all out there for the world to see it’s been hitting me in waves all night–physically and mentally. Crazy how that happens.

      And as for my strength, I’m honored you say that. The support you all give me really helps.

      Thank you so much for reading. How are you feeling these days?

  2. It took a lot of strength to write that, and to be honest, I think it was glorious and smart. Nobody really thinks to just put it all out there so that people can think about what it means to walk in your shoes.

    You’re not alone on most of it. Fatigue kicks my ass constantly. I’m achy every day. No breaks. And your TMI tummy troubles are constant for me. If I don’t take Culturelle every day, poop just doesn’t happen. I’ve gone more than a week before without movement. Adam and I joked about how I was carrying around a poop baby.

    Showers, for me, are always scary because my feet go totally numb/tingly – so I have to really make myself take showers or I am just grungy and forget about it. And that goes hand in hand with depression.

    Frankly, I’m surprised that they don’t list depression as one of the side effects of having MS, just to be honest with you. The disease just kinda throws you into one because it pulls away your life force! It takes EFFORT to be yourself.

    You should be proud of yourself every day just for walking the walk as Nahleen, because, honey, you ROCK.

    • nahleen

      Thanks Rachael!!!! YOU ROCK BUNCHES YOURSELF TOO!!!!!!

      I’m blown away by your description of my blog, “glorious and smart”. Thank you so much. That means a lot. And the description feels electrifying and helps encourage me to continue to express myself.

      It’s time we all knew what we all go through. Afterall, we are all just humans trying to live our lives and we really can help each other and ourselves for that matter.

      So sorry to hear you are going through so many crappy symptoms yourself. A poop baby? I find it humorous but then again I feel so “Ugh” for you. I know what it feels like after a couple days.

      For me showers feel like big events. I never know how I’m gonna feel because my lupus really likes the warmer water in the showers but the MS, of course, doesn’t like it one bit. It’s very confusing. Do you have a shower chair that might help a bit so you can at least have some tepid/cool water spraying on you?

      And yeah. Depression sucks. It’s taken a lot of finding my own spiritual path to help me get up and live my life moment to moment and day to day. As for a side effect, I’m pretty sure that some doctors I have/had do believe it’s a symptom or at least have agreed that I probably would be depressed at least at some point within this process. My current neurologist made sure to address it with me in my first appointment with him and wanted to make sure it was all being taken care of.

      And as for you, you are a true inspiration yourself and I really enjoy your Blogs. You are one of my inspirations and I thank you.

      • You are so sweet!

        I had a shower chair back in CA, and it was so helpful, but I don’t have one here in Chicago. The key for me is to get to that tepid watermark where I’m not overheating myself – I’m fine then. The bad thing is that I really love hot showers, and my muscles spasm so much on their own that they really kind of need the hot water to help them relax! Still, I’d rather have a lukewarm shower than none at all!

        The term “poop baby” makes me laugh – so you’re not wrong to be amused at all. It’s much better than what Adam came up with first, which was “Full Playdoh Factory”. THIS IS WHAT I GET FOR BEING MARRIED TO A SCREENWRITER! *lol*

        I think it’s neat, even though it’s kinda sad, that we both deal with the tingly foot bottoms. There’s solidarity in that. It’s kinda like we’ve got our sisterhood of symptoms.

        I just pimped your site on mine, and then posted on FB, G+, and Twitter so hopefully you’ll get more readers today!

        • nahleen

          Yeah I know whatcha mean about tepid showers. And I think we have something in common with other parts of our bodies (NOT THE MS) yearning for hot showers to feel better. It’s very confusing.

          And “Full Playdoh Factory”? Ha ha!!! Very funny. Corey keeps me laughing too.

          You have tingly foot bottoms? That is so weird. When did they start for you? Mine were my first obvious symptoms and most often now it doesn’t happen.

          LOVE LOVE LOVE what you said about “sisterhood of symptoms.” There’s something so unifying with that description. Otherwise we are told by our doctors that even though our symptoms are similar everyone with MS is different so it’s just hard to know who to connect to.

          And thank you sooooo much for Pimping my site. I will do more of the same for you I promise. Gotta rest more today. Feeling drained.

          • Tingly foot bottoms were one of my first symptoms and are one of my first indicators that I’m either having a relapse or need to get somewhere cooler. I get em as soon as I’m overheated.

            You know, before I had a lot of friends online who have MS, I would have believed the doctors about how MS is completely different for everyone who has it, but there really are some unifying elements.

            I think I’m going to write on that today. Thanks for inspiring me. šŸ™‚

            Hope the nap’s a good one for ya and that you get some energy back.

          • nahleen

            Hmm. So interesting that tingly foot bottoms were one of your first symptoms. I wonder who else out there with MS had that same thing happen to them and I wonder (ha ha) if anyone is making note of PATTERNS having to do with MS.

            Completely agree about symptom similarities. There are a lot of them among those I know with this dang disease that’s for sure.

            And yay I inspired you. How cool is that?

            Thanks for the rest well wishes. I think some Me Time is in order.

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