Category: Comorbid conditions

Myalgic Encephalitis / Chronic Fatigue Syndrome is a common co-morbid condition of fibromyalgia. Some specialists argue that the two conditions are slightly different manifestations of the same underlying disease process. Others consider them to be two very separate entities – to the point where many suffers have been diagnosed with both as separate diseases.

Either way, it is very common for fibro-warriors to also suffer severe fatigue. (As if chronic pain wasn’t enough on its own!)

Most people have tried being over tired. It might be due to study, working too much, partying too hard, a newborn or a sick child. Any number of things might lead to being overly tired. So you would think that other people would understand. But while you might be able to understand bone weary tiredness, for most people this can be remedied with enough caffeine in the short-term, and a good long sleep to get you back to normal in the longer term.

But to truly understand fatigue in the sense of chronic fatigue, I think you have to actually experience it. It is being so tired that you are unable to keep your eyes open as soon as the lights dim, where it’s a struggle to put one foot in front of the other, where your muscles are so tired that you shake as soon as you stand up and you can’t lift a glass up to your mouth. Sometimes, it’s being so tired that sitting up in bed for 30 mins means you have to lie back down and have a nap to recover. But that sleep you get is not restorative. It might get you back to zero energy rather than negative. It is that horrendous sap of energy that a bad bout of influenza will give you, but it lasts for weeks or months, or for some people years.

Thankfully, I am not that bad most of the time. It takes a lot of management to avoid being that bad. Before I stopped working, that was pretty much my days off. Now it will only happen if I push too hard or the Fibro-Troll invites some friends over in the form of an extra injury or cold/flu.

So what do I do to manage fatigue?

I stopped working. This is not an option for everyone and it was a decision I really struggled with. For me, being a Vet was part of my identity. It wasn’t just what I did, it was who I was. Giving this up was one of the hardest decisions I ever had to make. And guess what? The world didn’t stop turning. I had 2 years of income protection insurance, which was a huge hassle and stress to get. But since then we have only had my Knight’s income. We’ve made sacrifices, but we manage. I’m a lucky woman.

Pacing. If I had to choose just one thing that I do to help manage fatigue, it would be pacing.

One thing that is very common among Fibro-Warriors and others with chronic illnesses is the boom and bust cycle. I was guilty of this (and sometimes still am). I would push until I had finished something instead of just going to bed. Or I felt a little better, so I would decide to clean the house or go shopping. I wouldn’t feel too terrible while I was doing it, but the next day or week the Fibro-Troll would have the whole family over for a reunion. I would barely be able to walk to the bathroom, let alone do anything remotely productive.

So I have had to learn to pace. This means setting a timer – on a good day this might be 20 or 30 mins. On a medium day, it might only be 10. On a bad day, I give myself permission to get nothing done. I do my housework or physical thing until the timer goes off. And then I stop (most of the time) and REST. If I do this, then some days I can do an hour or two of physical work spread out over the day and not end up crippled for the next three days.

Improve Sleep Quality. Non-restorative sleep or insomnia is very common and only adds to the fatigue. My issue is more the non-restorative sleep, although I do have occasional bouts of insomnia.

I will go into this in more detail in a post dedicated to sleep.

Vitamin and mineral supplements. I take quite a few supplements, but only one stands out as being specifically for fatigue, and that is vitamin B12. I take a sublingual (under the tongue) methylated version of B12. I accidentally ordered the non-methyl version recently and it simply doesn’t do the same job.

The other supplements I take that are partially for fatigue are:

• Magnesium – I take a powdered oral form that has other vitamins and minerals
• Vitamin D – one of the symptoms of low Vitamin D is fatigue, but it is important to have this tested before starting any supplements
• Bioflam – I mentioned this in my recent post on dysmenorrhoea, it has a bunch of B vitamins in it that are supposed to help with fatigue.
• CoQ10 – Co-enzyme Q10 is supposed to assist with ATP production (the body’s main source of energy) so it theoretically helps with fatigue. I’ll talk more about this when I write my post on migraines and headaches.

Hyperbaric Oxygen Therapy. I have an entire post dedicated to this. You can read more about it here.

Diet. A healthy diet avoiding processed foods and too much sugar is vital for me to manage my fatigue. If I let some “crap” sneak in, then the fatigue (and pain!) is much worse. I go into my reasoning in more detail here.

Chronic fatigue is a complicated and difficult symptom to manage. It is much more involved than just getting some more sleep. I still haven’t got it perfect, but it is a work in progress.

 

 

I was inspired to write this series by a lovely young lady in one of my Fibromyalgia support groups. She is going through much more than a teenager should have to and I don’t think she realises quite how strong and brave she is. So for Beth, I am starting my series on the fibro-troll’s friends (co-morbid conditions of fibromyalgia) with dysmenorrhoea.

Dysmenorrhoea is the medical term for painful periods. I have heard that some women have regular 28 days cycles and barely miss a beat when they have their period. Maybe they feel a little uncomfortable, but can pretty much live their lives normally other than having to deal with a little bit of blood. If you are one of these women – I hate you. No, I don’t really, but I will admit to being very jealous.

For most of my life I have suffered painful periods. I think the first year or two wasn’t too terrible, but pretty soon I was curled up in a ball, taking very strong pain killers and missing days at school. I was always academically inclined – I didn’t particularly like or hate school, but I wanted to be a vet more than anything, so it was important that I do well. When I was fifteen I was put on the Oral Contraceptive Pill (OCP or “the pill”).

One thing many people don’t realise is that the bleeding you have when you are on the pill is not a real period. It is simply withdrawal bleeding. The pill causes your body to think it is pregnant so that you do not ovulate and the lining of your uterus is not stimulated to grow as much. When you take the sugar pills, your body responds in a similar way to an early stage miscarriage and you have a withdrawal bleed. For some women this causes no obvious problems and the OCP has been amazing for some.

There is no doubt in my mind that this fairly reliable form of contraception has improved the lives of millions of women. Much of the progress towards equality would not have been possible without the invention of the OCP. But I also think the potential side effects are very much downplayed.

For me, the pill turned out to be a disaster. For the first few months it was wonderful. I revelled in being able to postpone my “period” if I had a function or wanted to go to the beach. I had very little pain and my teenage pimples cleared up almost completely. My boobs grew very quickly which I didn’t like so much, but I learned to deal with that. (And I’m pretty sure my knight doesn’t mind that they did!) I stopped growing taller, so I’m a bit of a shorty, but that might have been my fate anyway. But pretty soon it stopped helping and my dysmenorrhoea returned.

So I headed back to the doctor. For the next few years I was on one different pill after another. I had no idea there were so many different formulations! Some of them helped the pain for a little while, some of them didn’t. But they all gave me one side effect or another. From constant nausea and stomach cramps, to weight gain, to extreme moodiness. Eventually I found one that seemed to be ok. My periods were manageable and I didn’t have any obvious side effects. Until I ended up in hospital with blood clots in my lungs. In the middle of university exams of all times! So that was the end of any type of systemic artificial hormone for me.

Since then I have been on quite a journey trying to deal with dysmenorrhoea. I have ended up in hospital a couple of times getting jabbed in the butt because I was in so much pain I was vomiting constantly. I have been diagnosed with Polycystic Ovary Syndrome – which means that not only are my periods painful, they are unpredictable too.

I also have endometriosis. This does explain my level of pain somewhat, but doesn’t make it any easier to deal with. I had an exploratory laparoscopy a few years ago to have the endometriosis confirmed and removed. It helped the heaviness of my periods, but didn’t make a significant difference to the pain.

Prior to the laparoscopy, I had a dilation and curette and had a Mirena IUD placed under a general anaesthetic. For a little while it seemed that this was the answer. It secretes a low dose of progesterone which is supposed to have little to no increase in blood clotting risk. Within a few months, my periods were almost non-existent. Everything seemed great. Then I noticed that I had very little libido and suffered from vaginal dryness. I was newly engaged, so this was a bit of an issue. Luckily my poor long-suffering knight married me anyway!

Unfortunately this was the least of my problems with the Mirena. I started growing haemorrhagic cysts on my right ovary. When these burst, the pain was horrendous. Pretty soon I learned to recognise the intermittent stabbing pain that signalled that another one was growing. It got to the stage where my doctor was willing to write a referral for an ultrasound without me coming in.

I started having Frequency Specific Microcurrent (FSM) therapy to treat the cysts.  Currently in Australia FSM is considered to be kind of like a tens machine and are only supposed to treat pain conditions. However I can tell you that over a period of about 16 months, when I had the FSM, the cysts would go away (confirmed on ultrasound), if I didn’t they would burst (confirmed by pain!).

As soon as I had the Mirena removed, the cysts stopped. My right ovary still feels the need to make a song and dance about it whenever it decides to ovulate, but I can deal with that level of pain.

So where does that leave me?

No OCP, no implanon, no depo provera injection, no Mirena IUD. Surgery didn’t help. So modern medicine has nothing left to offer me other than pain relief. Opioids mess with my head and make me constipated, so I take them very rarely. The only NSAID (Non-Steriodal Anti-Inflammatory Drug) that completely removed the pain for me was taken off the market.

It’s taken many years, and it is still a work in progress. But here’s what my naturopath and I have come up with:

• A diet that is low in sugar and grains, but high in vegetables, healthy fats, grass-fed meat, chicken and wild caught fish, and loads of fermented foods. Since April I have been doing GAPS and this is working wonders for my IBS, which in turn helps reduce the amount of cramping I have during my period.
• Chaste tree (Vitex angus-castus) in a liquid herb form every day, this helps regulate my cycles and reduces PMS.
• A supplement called bioflam – This contains turmeric extract

  

  plus a blend of vitamins and mineral that help reduce pain and inflammation.

• Magnesium – Epsom salts in the bath, magnesium oil spray and an oral powdered supplement.
• FSM to help my ovaries to actually ovulate. If I have a relatively normal cycle (for me that is 35 days) then the PMS is not as bad and the cramps usually aren’t either. If I just let it go and I have a 40,50,60,70 day cycle, the PMS and cramps get progressively worse. I stopped doing this for a while and the pain has been progressively getting worse, so I’m headed back for a treatment this week.
• Turmeric drinks – I have these as well as the bioflam. They taste good and reduce my need for other anti-inflammatory drugs.
• Heat packs – I have a few of these in various forms. I have wheat and silicone bead bags that can be heated in the microwave. I also have some gel packs that have a disc in them that when you snap it causes a chemical reaction that produces heat. These can be boiled to be reset. These are nice and small and can be slipped under a pair of jeans if I have to leave the house.
• Essential oil massage blend – I make this myself using the book “Like chocolate for women” as a guide. Some people argue that essential oils are just a placebo – I don’t really care. Even if it is only a placebo, they help a little and they smell nice.
• Acupressure. I am not a trained reflexologist, but there is a point below the ankle either side of the Achilles tendon that when pushed firmly can help reduce cramping. I find it is most effective if I get my knight to do it as I struggle to keep a sustained pressure with my fibro hands.
• Pain relief. Despite all this, I still need pain relief. I have tried lots of things over the years. Ponstan does next to nothing, Tramadol makes me completely loopy and significantly impairs my ability to function. There used to be an awesome arthritis NSAID called Vioxx, but it was taken off the market and the similar drugs Mobic and Celebrex just aren’t as good. I have found that Naproxen/Naprogesic (an NSAID marketed for period pain) and Buscopan (an intestinal antispasmodic)  in combination to work quite well. I discovered buscopan for period pain at one of my trips to hospital – incidentally it really stings as an injection! If I take these two drugs when I first start getting cramps, then I can usually avoid taking anything else. If I have to, I will take a paracetamol/codeine combination, but I try to avoid it as codeine is not my friend.

If you have made it this far – congratulations on your effort! And commiserations, as you probably suffer as I do. I hope you have found something that helps you and I send you virtual chocolate or ice-cream, heat packs, and lots of sympathy.

I am a member of a few online support groups for fibromyalgia. One re-occurring theme is that very few of us fibro-warriors have only fibromyalgia to deal with. Unfortunately, the Fibro-Troll has friends.  These friends are more accurately described as co-morbid conditions.

Co-morbidity is the presence of one or more additional diseases or disorders occurring together with a primary disease or disorder. It doesn’t mean that they are caused by each other, or that everyone who has one condition will automatically have the others, but some conditions commonly occur together.

Common co-morbid conditions of fibromyalgia include (but is not limited to) :

• Myalgic Encephalitis/ Chronic fatigue syndrome – some specialists argue that ME/CFS and Fibromyalgia are slightly different manifestations of the same underlying illness, others regard them as two different disorders. Either way, they commonly occur together.
• Migraines and persistent headaches
• Dysmenorrhoea (painful periods) and PMS
• Other pain disorders – arthritis and back problems are common
• Irritable Bowl Syndrome and food intolerances – I’ve talked about gut health  and why I believe nutrition plays a role in our health a little already.
• Sleep disorders – insomnia, restless leg syndrome and sleep apnoea are all common
• Anxiety and Depression – to be clear, Fibromyalgia IS NOT CAUSED by depression or anxiety, but they are common co-morbid conditions.
• Vestibular and balance disorders
• Multiple Chemical Sensitivities

These are just the most common ones, some of them are so common among fibro-warriors that they are sometimes considered symptoms of the condition.

I personally have all of these to varying degrees. I also have PCOS (Polycystic Ovary Syndrome) and endometriosis and I am highly sensitive to many of the traditional medications used to treat most of these conditions.

As they are common co-morbid conditions, I am going to start a bit of a series on what I do to manage each of them. I will try to keep each post as specific as I can, but some things will overlap, as nothing in the body works entirely independently of the rest of it.

My aim is to help others with any of these conditions, whether or not you also have fibromyalgia. And also to help myself, sometimes by putting things down in words they become clearer. If I am suffering a bit more from one of them, or I’m having a fibro-flare, then I can remind myself and my wonderful knight in tarnished armour of what we can do to help.