How fibromyalgia affects other illnesses and injuries

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Fibromyalgia & Oseoarthritis

One thing I have noticed over the years since being diagnosed in my early 20’s with fibromyalgia is that it tends to intensify everything else that is going on. Whether it is a psych issue such as anxiety or depression, a physical issue such as osteoarthritis or a disease such as type 2 diabetes, fibromyalgia seems to make dealing with them so much harder. I have learned a lot over the years about my chronic illnesses but there are times when they still take me by surprise and times when I wish things could go back to the days before any of this started affecting me. If there ever really was such days. Honestly, I can’t really remember a time that I didn’t get sick easily or injured easily. Even as a child I had strep throat and ear infections constantly. I caught everything going around from rubella as a baby to chickenpox to scarlet fever mumps, measles, and hand, foot, and mouth among others. I’m surprised I didn’t have the plague to be absolutely honest.

I am very prone to injury. I am not sure if this is just because I am clumsy or if it is more related to the fact that people with fibromyalgia seem to be more prone to falls. One study mentioned on WebMD suggests that this is because people with fibromyalgia tend to have balance issues. We apparently score worse on balance tests than people who don’t have fibromyalgia. It also mentions that the number of medications had no relationship with the scores but as we take more medications typically it can’t be ruled out. Not sure how they came up with that one…

In the early years of my diagnosis, my balance seemed to be pretty good. I really didn’t have many issues. Over the years, however, my balance has really declined. I started suffering about 10 years ago with severe bouts of vertigo that would render me immobile. This seems to come and go. Remittent and recurring it seems.

When I am injured either due to a fall or impact or something else I tend to heal a lot slower them most healthy people. Even long before the type 2 diabetes diagnosis, this has been something I have noticed a lot I seem to take two to three times as long as most people I know who are relatively healthy. Sometimes I even start to get better and then easily re-injure myself or if it’s an illness then I seem to get better only to then start getting worse, sometimes even worse than the first time.

Image Credit: Kirsten Corbett

This was the case with my leg the summer before last. One fall caused me to injure my knee and ankle and it took forever to heal. When I was finally starting to feel better I fell again and the second time through the fall was less of an impact (falling in the tub vs a fall downstairs) I was hurt even worse. Then the time I spent on crutches causes a shoulder and wrist injury that took forever to heal and I ended up having to forgo the crutches for a rented wheelchair for over a month. I’m actually still not fully healed. I still have tons of pain from all the injuries almost a year and a half ago. I was diagnosed with Osteoarthritis in my left hip and knee during all this and was sent to a specialist.

It would take both my fingers and toes to count the number of sprains, strains, pulls, tears and even breaks I have had over the years. Even when I was a child actually. They put it down to be being clumsy but honestly looking back I really wasn’t. I have always been careful and paid attention and gone slow. I was never one to rush anything just ask my husband and parents

 

Dermatographia & Rosacea

Image Credit: WikiMedia

I also have two skin conditions known as dermatographia and rosacea. Both are quite common in people with fibromyalgia, comorbid conditions (oddly enough they are not listed in that list) that are often present in people with fibromyalgia. Rosacea primarily affects the face but can affect your chest and neck as well. It causes inflammation and swelling on the cheeks, nose, and forehead. The skin typically looks red and inflamed. Facial flushing is common with rosacea as well as a bumpy look. One of the main causes for me is stress or just being overtired or sick. Any sort of stress causes a flare. With rosacea itself, I do not experience and pain or itchiness typically.

Then there is the second condition dermatographia aka skin writing. This comes and goes for me as well in flares and is usually worse when sick, overtired or stressed. This one causes me a lot of annoyance. My skin is always itchy and dry no matter how much I moisturize it or what moisturizer I use. Most moisturizers actually aggravate it. Anything with feverfew is a no go for me. Typically suggested for rosacea it just makes me miserable. I found this out with Aveeno Ultra Calming lotion. It made my skin crawl for days after using just a little. I was tested for an allergy to it and I do not have one. My dermatologist at the time thought it might be from the dermatographia but was not really sure.

I can skin write. Sometimes very plainly and easily but I don’t because it really makes my symptoms worse and makes me miserable so anytime anyone who finds out I have it asks I refuse to show them typically. It just makes me so uncomfortable and itchy. My diagnosis with it was a weird one: about 3 years ago Eddie and I were trying to get pregnant and as part of the blood work etc, I was diagnosed officially (finally) with type 2 diabetes. During this time they decided it would be best for me to start on insulin right away.

I was put on the fast-acting insulin Humalog. I had a 15-minute appointment with a nurse who showed me how to inject the insulin in my stomach and was provided with a Novopen 3, a box of BD ultrafine pen needles and a script for Humalog and one for test strips. This was my pre-Freestyle Libre days. I was also given a 15 minute consultation with a nutritionist who said I should avoid eating sugar and sugary foods and eat some vegetables (no shit sherlock) and proceeded to provide me with a couple of recipies by email with turned out to be smoothies with a ton of sugar and some sort of protein pancake recipe which my best friend (who is a nutritionist) said was full of carbs and not so good for me.

Once home I started injecting myself at the next meal. Very little info was given on how to bolus for carbs etc. It was just “make your meals each a set number of carbs and use this much insulin at each meal” kind thing. I struggled with it. After about a week I noticed big welts each time I injected. I thought I was doing something wrong. Called them up went back was told I was likely not sticking the needle in far enough (I was, it was a 4mm needle and it was flush with my skin) and told to go to a 5mm needle. So I bought a new box. This did not help.

After injecting my skin around it would become really itchy, inflamed and welted. My dad injects insulin and said this should not be happening. Ocassionally yes if I actually did not get it in all the way and the insulin was too close to the surface but not each and every time. He watched me inject, gave me pointers and still it persisted.

They switched me about 4 times to different types of fast-acting insulin but it still happened. It sometimes would stick around long enough that the next time I would still have an old one. I took pictures and posted them on a facebook group for diabetics and was told no, this should not happen. So off to an allergist I went. She did allergy testing and said I was not allergic to insulin. Instead, she diagnosed me with dermatographia. I could always skin write but had no idea it was a “condition” or not normal.

Type 2 Diabetes & Neuropathy

Image Credit: Kirsten Corbett

As mentioned above I was diagnosed in 2016 with type 2 diabetes and later with associated neuropathy in my hands and feet. Obviously this is a totally unrelated disease but sometimes the two seem to feed off each other for me. Especially the neuropathy. Fibromyalgia seems to make it so much harder to bear at times as I am so sensitive to pain, especially nerve-related pain.

Diabetes itself is not really made worse by fibromyalgia. Fibromyalgia in itself will not cause or make my sugars any higher. That’s mostly diet, lack of exercise and the fact that my body either does not produce enough insulin or can not use the insulin it does produce effectively. One really has nothing to do with the other.

My body must have had issues now for a while though utilizing or producing insulin though because I have been diagnosed with diabetic neuropathy rather early in my diabetes diagnosis. It was only about 8 months before my diagnosis that my doctor suggesting I might be pre-diabetic.

Diabetic neuropathy is caused by high blood sugar injuring your nerves. It can cause a burning sensation (pain) and numbness (tingling) in your hands, legs, and feet. It can cause issues with your digestive tract and urinary tract and issues with your blood vessels and heart.

I have both peripheral neuropathy and autonomic neuropathy. Peripheral neuropathy is what causes the burning sensations, numbness or tingling, loss of sensation, reduced ability to feel pain or temperature changes, muscle weakness, and sharp pains or cramps. loss of reflexes, balance and coordination, ulcers and other serious foot problems and infections. Mine is mild to moderate.

The autonomic nervous system is what controls your stomach and intestines, your heart, bladder, your sex organs, and your eyes. Autonomic neuropathy is when diabetes affects the nerves in these areas. The main symptom for me with this is a lack of awareness when my blood sugar goes low called hypoglycemia unawareness, something else I have been diagnosed with. For some reason, I find fibromyalgia really seems to play havoc with this. Instead of just not knowing when I am low I seem to get false symptoms, high symptoms when I am low and low when I am high, etc. I have no idea what the reasoning behind this is and I can find little to no information on it. However, when I am in a fibro flare this always seems to be much worse.

One of the things I am really looking forward to and really hoping my insurance will cover is the Freestyle Libre 2. Which has added Bluetooth and alarms that push to your phone or reader when you go below a certain blood sugar level. While not a full CGM like Dexcom because you still have to “scan” to get your actual glucose level it will at least alarm you when you are going low so that you can head off an extreme low. This will help with someone like me who doesn’t feel when they are going low or for peace of mind when your diabetic child is sleeping at night and goes low.

My insurance will not cover a Dexcom continuous glucose monitor unless you are type 1. Which I think is antiquated as for one, studies have shown there is actually 5 types of diabetes, something that is becoming widely more accepted.

This sums it up pretty well (source: LiveScience):

  • Cluster 1: Called “severe autoimmune diabetes,” this form is similar to type 1 diabetes. People in this cluster were relatively young when they were diagnosed, and they were not overweight. They had an immune system (autoimmune) disease that prevented them from producing inulin.
  • Cluster 2: Called “severe insulin-deficient diabetes,” this form was similar to cluster 1 — people were relatively young at diagnosis and were not overweight. They were also not producing much insulin. But, crucially, their immune system was not the cause of their disease. People in this cluster “looked for all the world like [they had] type 1” diabetes, but they didn’t have “autoantibodies” that indicate type 1, Wyne said. Researchers aren’t sure why this happens, but people in this group may have a deficiency in the cells that produce insulin.
  • Cluster 3: Called “severe insulin-resistant diabetes,” this form occurred in people who were overweight and had high insulin resistance, meaning their bodies were making insulin, but their cells were not responding to it.
  • Cluster 4: Called “mild obesity-related diabetes,” this form occurred in people who had a milder form of the disease, without as many metabolic problems as those in cluster 3, and they tended to be obese.
  • Cluster 5: Called “mild age-related diabetes,” this form was similar to cluster 4, but the people were older at their age of diagnosis. This was the most common form of diabetes, affecting about 40 percent of people in the study.

So I really hope that they will cover the Freestyle Libre 2 since they cover the original. If Health Canada ever approves it for sale in Canada. Anyway, end rant, so basically the neuropathies cause some major issues and combined with fibromyalgia as well it can be a bit of a nightmare. As with what I mentioned above about injuring my leg last year and then the whole thing with my Wisdom teeth and now what I have gone through the last month with a simple tooth extraction of a tooth with a failed root canal and infection, fibromyalgia can really exacerbate and make things that much worse.

Does it technically do this or does it just feel like it does? I really don’t know. All I know is tons of other people I have talked to with fibromyalgia agree that 1) they usually have multiple comorbid and not comorbid conditions along with it. It’s such a broad diagnosis anyways and 2) that they feel that it worsens their symptoms for other things such as depression and anxiety or other mental disorders as well as many other disorders, diseases, conditions, syndromes, etc.

If you made it to the end of this post I commend you and would offer you a lollipop but I don’t have any

Is it denial or living life to the fullest?

I have to sometimes wonder that. I decided recently that I refuse to give in to Fibromyalgia. I refuse to give up and stop doing things and going anywhere. I am determined to keep active and continue to do the things I love even if they are a struggle a lot of the time. Is that denial that I have a chronic condition that causes widespread pain, cognitive issues, fatigue and balance issues among other things? Or is it just refusing to give up and live life to the fullest?

I am determined that for as long as I can I am going to continue to walk, hike, drive (as long as it’s safe), and do all the things I took for granted before being diagnosed. I’ve done this for the last 15 years off an on. Sometimes I did let it get the best of me and I stopped working, stopped living and hid away. My life is much different now though. I have a job I can work from home at my own pace. I have a loving and supportive husband who though sometimes likely annoyed never lets it show.

Encouragement and determination are my friends. I refuse to slow down unless I need to. I understand sometimes my body is overwhelmed with pain and fatigue and I just need to rest. So I plan to rest and then get right back up and keep going. I am not letting Fibromyalgia stop me from accomplishing my dreams. I am not letting it stop my husband and I from accomplishing our dreams together. I am not letting it take control. I have control. I have options. I have support. I have everything I need to live life to the fullest and I fully plan to do so!

Pain, Hospitals & TMI

I’m going to apologize in advance as this post may contain a little too much information. I admit sometimes I feel a little bit embarrassed or hesitant to talk about certain things, however that being said I feel it’s important to talk about women’s issues and health and it’s my blog and my life and what I’m going through so if you’re a bit squeamish, don’t like talking/reading about women’s health issues this post might not be for you.  So don’t say I didn’t warn you

This is also going to be really long! So, I’m going to jump right in.  As a teen, I had heavy, uncomfortable, painful periods that happened more often and lasted longer than most other girls my age. At 15, I suffered from numerous cysts on my ovaries that ruptured leaving me doubled over in pain, throwing up, feeling clammy with a high heart rate. I had numerous trips to the ER but luckily no surgery was ever needed. I was never diagnosed with PCOS but it was mentioned when I was younger.

Maybe that should have been a clue but I was always told that despite that it was normal and that as I got older it would even out. The cycle would get longer between, the periods lighter and less painful and shorter and this actually did happen and the cysts stopped, and for about 23 years things were pretty normal other than moderate cramping and headaches and maybe some mild to moderate PMS symptoms.

My last few periods have been heavier and I’ve noticed more clots and they are lasting an extra day or two as well as the time between went from about 27-30 days to about 30-33 days in between.  My PMS symptoms have gone from mild/moderate to severe and pretty debilitating. To the point where I am useless for a week every month because I feel even more crappy then I already do.

Last Thursday I started my period what seemed to be 10 days early on day 23 of my cycle. It seemed to be a moderate period, with some pain and a headache and the normal heaviness. I didn’t think much of it other then it was odd that it was early. 2-3 days is one thing but just a bit more than 1/2 way through my cycle was odd for me.

The night before last we went to bed as normal around 11:30 p.m. and I was feeling fine and I pretty much thought my period was over as I was at the end of day three and the flow had stopped.  I woke up around 1 a.m. due to the cat scratching at the door for food because someone forgot to feed him. I went to the washroom and noticed I was bleeding really really heavy and I had a bad headache. I changed my tapon and pad which I use as backup incase the tampon fails at night.

Eddie woke up when I did so I yelled to him to feed the cat while I was in the washroom. We went back to bed and I fell back to sleep even though I was feeling a bit odd, but I didn’t think much about it. About 3:30, I woke up from a dead sleep and stretched out and just about screamed out in pain.

I got up and hobbled over to the washroom and realized I had completely soaked through the tampon and soaked the pad almost to over-flowing in a little less than an hour and a half from the time I changed them last. Usually I don’t have to change them at all overnight unless I sleep more then 7-8 hours. For safety sake I never go more then 8 hours overnight as recommended.

I kinda felt like something was wrong but still shrugged it off and hobbled back to bed. The pain increased so fast and so much that I was doubled over by the time I made the 10 steps or so back to bed. I tried to shake Eddie awake but couldn’t move because the pain was so intense. I pretty much yelled at him to wake up. I grabbed the long pillow and curled up in the fetal position and told him something was really wrong.

I grabbed my phone and checked my heart rate which is normally about 60-65 when resting and it was 98bpm. I called 811 and spoke to a nurse who of course said go to the hospital. She checked the Digby regional hospital for closures as it closes a few times a week due to a doctor shortage and said it was open and I needed to get there ASAP. She wouldn’t say what she thought it was just that I needed to be seen now, not later.

Eddie called my dad who drove over and picked us up and took us to the hospital. We were in the middle of a snowstorm, I couldn’t dirve and didn’t want Eddie with only a learners permit to drive me in the snow and freezing rain that had been going on for hours with wind gusts of up to 80km/h. It was a bad night all around.

After intake, they put me in a room and told me the doctor would be in when he woke up (not kidding). So we had to wait until 7 a.m. when the doctor finally dragged his ass out of bed. I tried to sleep but was in so much pain. No one offered me anything. Not even so much as tylenol while we waited the 3 1/2 hours for him to come in from the hotel I assume he was staying at. He was a visiting doctor from somewhere else I assume.

He did an exam and when pressing over my left ovary I started to scream and wiggle to get away from him.  He said you need an ultrasound and asked if I had ever had ovarian cysts or torsion before and I said yes I have had cysts and some that ruptured. He said I needed to get the ultrasound ASAP.

Of course, Digby only has a technician in a few days a week. So that meant an hour and ten minute drive to Yarmouth regional hospital for the ultrasound. He wrote it up as urgent and that he wanted me to be seen in the Yarmouth ER after in case I needed more tests or to see a specialist. So after debating about sending me by ambulance, they decided it would be quicker if someone drove me. They called the ambulance but were told it would be a 2-3 hour wait. They simply sisn’t have enough ambulances for a transfer and in the ER. So my dad ended up driving me an hour and ten minutes to the hospital in Yarmouth.

Luckily for me, before I left the Digby hospital the doctor asked if I needed something for the pain. I hesitated because I hate taking anything. He kind of got a bit snarky with me when I looked over at my husband and said “don’t look at him look at me, do you need anything for the pain? yes or no”, so I said okay and he gave me a bit of morphine.

We talked it over decided my husband should still go to work later as he was working 5-9 p.m. so we dropped him off at my parent’s place for some sleep instead of him coming with us and mom took him into work later on and dad and I continued on to Yarmouth. We got there about 10 a.m. and after about 1 1/2 hours they finished the ultrasound. She had issues finding and never actually found my left ovary so it took a long time, luckily the morphine was still working and dulled the pain quite a bit.

When the technician finished she called down to the ER in the hospital to let them know she was sending the results and me down and they refused to take me! They said she had to send the results and me back to the Digby hospital. She tried to explain that I was a possible surgical case and that there was no OR’s in Digby, they still refused. So she called Digby and spoke to the doctor there and he said I needed blood work and a CT but he had no way of ordering either without me being there so he said send me back to Digby.

As we were leaving the Yarmouth hospital I called out-patients in Digby and asked if I was able to have something to eat because my blood sugar was about 3.2 mmol/l and going lower. She asked the doctor and he said I could have something sweet and I could get a bottle of water and only sip it basically just wetting my mouth. So we grabbed a cookie from McDonalds. Chocolate chunk. Not the best option but the easiest.

So dad drove me an hour and ten minutes back to Digby knowing full well there was a good chance he would be turning around and driving me an hour and ten minutes back to Yarmouth in a few hours if it turned out I needed a CT right away. We got back to the ER in Digby and I had to be triaged all over again and wait for a second time to see the doctor, which turned out to be a different doctor. At least the first one told him I was coming and what was going on.

The second doctor noticed that the pain was radiating now to my upper left side of my abdomen and was still concerned it was a cyst but was now even more concerned it had ruptured and that I was bleeding internally. Not all cysts do that but some will cause internal bleeding which can be life-threatening. He was also concerned that it could instead be a bowel blockage or something else and said I need a CT and before he said anything more I said: “So I have to go back to Yarmouth today?”.

He said yes and apologized and I asked if there was any way it could wait till morning as I just wanted to go home and sleep. He looked like he was going to say no but then he said let’s get blood work done and see if there are any indications of an infection or internal bleeding.

We waited another hour for that and the pain was back fully by then. The nurse came in to give me an IV as I had been told through all of this no food or drink and as I am diabetic and had basically no food or drink since the night before and it was almost 3 p.m. at that point even though my sugar was holding steady at 5.6 mmol/l at that point.

As the nurse got ready to start the IV I panicked of course. I don’t mind blood work at all. I don’t mind flu shots or other needles. I don’t mind giving myself insulin injections, glucagon, etc. But I hate hate hate IV’s! With a passion. I panic every time someone comes near me with one or mentions one.

So the nurse left and asked the doctor how necessary it was as my blood sugar was fine and all they were going to give me was dextrose and saline and some pain meds. I said they could give me a shot or pills for the pain meds I don’t care I just can’t handle the IV. So he said fine and she left and never ended up giving me the pain meds or water.

He came back an hour later and said the blood work looked normal and that he was going to let me go home on one condition that I came back to Digby overnight before they closed at 6 a.m. if I had a fever that even touched 100°F or if the pain worsened or spread, had any more bleeding (which had stopped at that point) or in the morning if the pain was the same or worse or a fever and weakness and/or tiredness after a good night sleep or any indication of infection or internal bleeding that I go straight to Kentville or Yarmouth hospital over the next 3 days or Digby if they are open.

So today we have been keeping a really close eye on me. The pain is a bit less, but still there, but no fever or anything. So I have to keep a close eye for the next few days as well as we don’t know for sure but we suspect it was an ovarian cyst on my left ovary that may or may not have ruptured and possibly bled internally but stopped, causing intense pain. Seems to be the story of my life right now. This uncertainty about what is going on within my body.

My mom brought up something that’s been bothering me though. She went through menopause at the same age as I am now, she started at about 38/39 and I am 38 turning 39 this year. Her mom went through menopause starting at age 37 and my aunts were 38 and 39 as well when they started.

I know for the most part you usually start about the same age as your mom and sisters and since I have no sisters and her and her sisters and their mom were all the same age as I am now. I am starting to wonder if maybe I might be going into early menopause myself or at the very least it’s in the back of my mind that they all started around my age.

I also know there is a correlation between Type 2 Diabetes and early menopause as well as a lot of women with Fibromyalgia experience early menopause as well. As I said before I have never been diagnosed with PCOS (Polycystic Ovarian Syndrome) and other than the uterine infection that landed me in the hospital a year and a half ago for 4 days I haven’t really had any issues in between the cysts when I was younger and now. Hopefully, this is not just another thing to add to the growing list.