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

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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

This is the song that never ends…

After everything in the last three weeks, I was hoping and looking forward to going back to work yesterday. Well, it never happened. I am going to apologize in advance as this post contains TMI but this is a personal blog and well, this is personal. So, if you don’t like talking about gross stuff and body functions, don’t read any further. Since the second round of antibiotics, I have felt pretty horrible. Nausea, vomiting, fever, diarrhea and generally just feeling ill, on top of the pain.

Last Thursday and Friday night I was really feeling particularly horrible. Thursday night we stayed up in the city mom and I, in a hotel so that I could go to an 8 am appointment at the VG oral and maxillofacial surgery department.  I spent the whole night with a fever and with it coming out both ends so to speak (vomiting and diarrhea). Since then nausea, occasional vomiting, stomach cramps and tenderness, diarrhea and fever and just general feeling of being unwell has been pretty much how I feel all day every day. I have stomach cramps as well and really bad heartburn.

Friday night last week Mom and I stayed in a hotel overnight so we did not have to drive the 2.5 to 3-hour drive to get to the appointment at 8 am. I spent the whole night in the bathroom wrapped around or on the toilet. They told me at the VG that they could not see any outward signs of infection but urged me to see my family doctor to have blood work as it would confirm if something is still going on. They cleaned my socket again and I am not sure all they did but they said there were still bone fragments, Alvogyl paste, food and other debris in it.

On the way home I just slept through the whole drive which ended up being almost 6 hours as we had to go to Bridgewater for an appointment for my mom as well. I wasn’t feeling well at all. Over the weekend I felt okay on Saturday and was starting to feel a bit better but by Sunday I was feeling pretty sick again. I still planned to try and go to work Monday as the dentists’ office had only put me off till Friday. On Monday morning after speaking to my manager we decided I would not come in yet and she took me off the schedule until Thursday.

I called and got an appointment at my family doctors who had a cancelation at 3 PM and drove myself up to Halifax yesterday. At this point, I am not on any medication except Advil or Tylenol as needed. I have Tylenol 3 for the pain but the pain has subsided considerably, now the issue is nausea, loss of appetite, stomach pains and tenderness, fever, and diarrhea. He saw me and put me off until next Monday, December 2nd. He suspects that I may have a Clostridioides difficile (C. diff) infection now as well and/or still have the dental infection even though they were telling me it was under control he suspects it may not be.

So now I have to do a stool sample and get blood work done today or tomorrow. Preferably today. The only issue is now after over a week of watery diarrhea for some reason last night and this morning I can’t seem to go. I feel like I need to and I feel horrible but so far nothing. It’s been 3-5 times a day for the last few days up until last night. And now when I really need to collect the sample I am just not going. I still have all the other symptoms. I still have a fever, loss of appetite, my stomach hurts, I feel like I am going to throw up and I just feel really unwell.

Unfortunately, it takes 3-5 days for them to get the results back, it’s now Tuesday, and I am limited to where I can take the stool sample and the hours I can take it there. I really can’t handle another long drive right now. I am concerned that I will not be able to get it in time to have the results come back before Monday. I am tired of driving or being driven to Kentville and Halifax and who knows where else. I just want to be at home getting rest instead of having to drive all over the province to be seen by people who just keep sending me home in misery.

*Edit – I finally got the stool sample thank god, now at least they can properly diagnose me hopefully, what a relief!

Taking control back

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Some days I really feel like a miserable failure at controlling my diabetes! Being sick the last few weeks with a bad infection and having to go on antibiotics, steroids and anti-inflammatories have really taken a toll on my blood sugar. Before all this, I was starting to get some control back. I was doing good enough that I was down to 10 units of long-acting insulin at night after starting Glumetza. I was told at that point that if I could get down to 10 units and maintain an A1C within range of 5.6 to 6 then I could come off the insulin altogether and I did it!

Now though my Freestyle Libre is now estimating my AIC to be in the 7.9 range and climbing. It’s amazing how one infection over a 2 week period can throw everything off so much. I have to admit that even before getting sick I was starting to slip. I had switched from using my Libre reader to the new android app using my phone and NFC as it uploads directly to Libreview cutting out some extra steps. At some point, I stopped bothering to scan and was only doing it once a day instead of at least every 8 hours as needed to capture 100% of the data and get all the proper charts and everything else. On top of that, I was missing doses of Glumetza as I would just forget to take it. So really this started before getting sick but getting sick has just made it get out of hand.

I know I need to get that control back. I just don’t have a clue how. I have been careful the last few days to ensure I am taking my Glumetza each day since I am also on a ton of other meds (5 other prescriptions at the moment, 9 in total over the last two weeks). I am really struggling though. It’s as simple as scanning my sensor to capture the data. I don’t know why that’s so hard to remember. I am not using my glucometer at all either. I haven’t pricked my fingers at all in weeks to even see if the Libre is working correctly beyond one finger prick when inserting a new sensor.

So overall my control has become very poor again and to make matters worse today I find out my new drug plan does not cover Glumetza at all in either its brand name or generic forms and so I am now going to have to either go back on insulin, or switch back to Metformin, which was causing major stomach issues, or be switched to something else altogether. I guess it means going back to the table and re-looking at everything. I can not afford $114 every three months for it. So something will have to give. Maybe going back in insulin is the best thing? I mean at least it would allow me more control, right?

I know I can’t beat myself up too much about the actual numbers right now as first Prednisone and then Dexamethasone has really raised them through no fault of my own, not to mention the other meds. But I really need to be scanning my sensor at least every 8 hours or even better, before and an hour or two after meals and double-checking a bit more often with test strips. I can’t even remember the last time I bought any test strips. I have been on the same pack for almost a year. I have a ton of needles, lancets, test strips all just lying around not being used. I got a little too comfy with the Libre and not looking beyond the AIC to the actual numbers.

I don’t even want to talk about meals… right no I am on a soft food diet and have been for 2 weeks and will be another 1-2 weeks most likely. So I am really struggling cause it is all carbs, starches and sugary stuff. Even though I know it doesn’t have to be I just don’t have the energy to cook and have been so sick that I am unable to stand for any periods of time and so I am eating ready-made sugary things which is not helping at all. I can’t even stand up long enough to do a couple of dishes so cooking is out of the question.

Once all this stuff is over with my tooth, jaw, and face I am really really going to need to take back some control and once I am feeling better start figuring out some meal prep once I am back to work. All stuff I needed to do anyways since I royally suck at it. I suppose I should give myself a break and chalk this all up getting so out of hand to being ill but I kind of feel like a failure anyways and it’s bugging me so much and making me really frustrated and mad.