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

Chronic Pain & Fibromyalgia

The last part of January and the first week of February have been a bit rough. I was diagnosed years ago with Fibromyalgia and for almost 10 years I spent a good majority of every day trying to just cope with the chronic and incessant pain. For the better part of the last 3 years though I have had a huge decrease in pain to the point it was not top priority anymore. However, the last 2-3 weeks has been a bit rough. I am sore all over, my muscles and joints throughout my body hurt. I think maybe the pain in my hip and leg and the falls are what brought it on/brought it back.  That and sitting 10 hours a day or more typing doesn’t help. I tried Lyrica again but at the same time my doctor also put me back on metformin to see if we could get better control over my blood sugar and the side effects of the two made me miserable. Lyrica causes me severe vertigo. To the point, I won’t drive, and I need to drive so I am not going to take it.  My doctor wasn’t thrilled that I refused to take any medication for the pain so instead, he suggested I look into CBD oil, which I am not thrilled about so after researching it a bit I decided that was a no-go as well. Too expensive, not covered by insurance (obviously), etc. Just not an option.

On the plus side, we were able to afford insurance, only for me though and not Eddie which I am also not thrilled about. He will have insurance in another 9 months through work anyways I think, so we were more concerned about me at the moment and making sure I can still afford insulin, my Libre, metformin, etc. The insurance is only going to cover 80% to a maximum of $1000 a year towards medications and for the medical equipment such as my Freestyle Libre sensors it will only cover 80% to a maximum of $1000 in the first year, $1500 in the second and then $3000 in the third year onwards per year which means the first year it will only cover about half of the year for my sensors, but hopefully at that point I will have secondary insurance through Eddie’s work which will cover 50% but again it’s better than nothing at all.

Since I am not taking anything at the moment for the pain which is pretty bad, like 8 out of 10 pretty much continuously all over, almost every muscle and joint, I have been searching for other alternatives and I think the only thing that seems to help relieve and make me comfier, or in other words 4 out of 10, effectively halving it, is heat. I had Eddie buy me a heating pad the other day and it seems to help. So does having the wood fire going, I think it’s maybe the dry heat. I want to get a heated throw blanket. I think I am going to get one next time I have a little extra if I can find one for a decent price. Tea seems to help too. I think it’s the cold. This cottage is so bitterly cold sometimes, it isn’t insulated very well and it’s damp. The weather has either been quite cold, like -20 with snow or it’s been around 3 and raining out. It seems to go back and forth between the two, which isn’t helping at all.

Work, Medication & Relocation

I am about half way through my third week back at work. I am doing six hour shifts this week. So far I am doing okay. Not great but okay. I am still having considerable pain but I am just glad to be back. I started Lyrica about the same time I started back at work (the night before). That is not going so great so far, not that I really expected much. It’s not really helping at all with my pain during the day. At night it makes me so sleepy that I am unsure if I am sleeping okay because of that or because it is helping my pain. I think more just that it is knocking me out

I started at 75 mg and was supposed to increase it after about a week slowly up to no more then 300 mg. I haven’t gone up at all. The reason is that I don’t think I would be a fully functioning human being if I did. I can barely tolerate the 75 mg. I tried last night just the one time to increase to 150 mg, today I struggled with every word at work, I was staring off into space and I felt as if I had cotton balls in my mouth. I am not doing that to myself again tonight so back to 75 mg I go.

I am going to see if I can get a prescription for 25 mg from my doctor and try going up more slowly from 75 mg. I can see why I hate this medication the first time I was on it. It really does a number on you. I am so dizzy as well. I am scared to drive and won’t drive right after I take it. So I take it at night. I am not sure it’s going to work for me but I need to give it some more time I think. It’s hard because I am tired of dealing with the pain which is still pretty considerable. I have pain which is sometimes feels like a stabbing pain and other times a burning or searing sensation down my leg. I have pins and needles and a numb sensation that happens often. I am also getting a lot of swelling still.

I want so badly to just ditch the crutches and walk but I am scared to as well. Sometimes I wonder if that part is in my head. If I am just limiting myself because I am scared. The medication is making me unsteady and dizzy, plus my leg tends to give out from underneath me but should I just stop using the crutches? I am trying to slowly come off them. I can put most of my weight on my leg with them. Without them though I tire so quickly and I hurt so much more. I really am not sure what to do there.

Anyway, so as you can guess from the title of this post, Edward and I have been considering relocating for a little bit now and guess what? We are moving! We’re doing it! Edward found out today he has a job in Digby at Gidney Fisheries! He starts November 19th and gave his notice at his current job today. He was concerned how his boss would take it but he took it pretty good and was happy for him.

I also put in my resignation at the bank today, or at least that was the plan. Instead though I am going to see if I can take a leave of absence at their suggestion. Apparently they have an option when moving to another city or town in the same or different province that you can take a transfer leave which gives you 90 days to apply to and get a position in the same bank with another branch, location or department. If you don’t get one then on the 91st day your employment ceases as if you resigned but it also gives you a chance to keep your benefits and seniority while I attempt to find something and 90 days in case nothing is available right away. I read somewhere I have to give 4 weeks notice to do this but they suggested it so hoping no one notices

When I mentioned I was resigning my manager asked me to give him about an hour before I put in my resignation and talked to his manager then came back and told me this. They said they hope I can stay with the bank. They have branches in both Digby and Yarmouth. Yarmouth is only about an hour’s drive. We could settle somewhere between Digby and Yarmouth if I got something there eventually. In the meantime my parents have offered to rent us the cottage they just bought for quite a bit less then what we are paying for rent here.

They bought it outright so no mortgage. We would pay the utilities and a small rental fee all in one, the utilities will be on budget plans that will be the same each month, they plan to keep them in their name I think and we just pay them one amount to cover it all and even if we don’t and we pay the utilities ourselves in our name we will still be ahead. We’d be looking at half to two thirds what we are paying here once everything is said and done. About a $200 to $350 savings a month over our current living situation here. Edward will be making a bit more then $2/hour more there then here, plus after 6 months he will have full benefits.

If I stay with the bank I will still have everything I have here (full benefits plus lots more) but be $1 to $2 less then I make here. So in the long run it would even out pay wise. I have a lead on a job outside the bank as well and have been talking to a recruiter for a domain registration and web design/hosting company that has an office in Yarmouth and one here in Halifax, they are really interested in me. I have actually worked for them before.

They are looking for both domain specialists (sales) and technical support in Yarmouth. I enjoyed it the first time I worked there but I left to go to Afghanistan and when I came back they weren’t hiring and I moved on to somewhere else and honestly never considered them again till now. I know a few managers and other employees. In the meantime I can do some transcription work for my mom who has a lot of work right now and could use my help.

Overall this is a move in the right direction for us I think. We will be getting out of the city which we both want. We are tired of it here. We will be living in an area we love doing things we love. We’ll miss our friends in the city but plan on still doing a once a month game night with them and they can come visit and we will be in the city a lot still. We have to keep our doctor in the city as there is currently a shortage and over 50,000 Nova Scotian’s who don’t have family doctors. Plus we like him and want to stay with him anyways

So anyway, in the long run though it will mean saving more and much faster. We can save a down payment now, it would actually be possible. I plan on taking the full amount we would pay for rent up here each month, pay my parents what they want and take the rest and put it in a savings account. Something we can’t easily access. Also it will be good as well because the cottage is 2 bedroom, or will be in a few months when we make it back into a two bedroom. So we will start the process again for fostering/adoption. We are so excited!