LIVING WITH FIBROMYALGIA

Fibromyalgia is an unpredictable disease affecting 1 in 20 people across the globe. Also known as – Myalgic encephalomyelitis/chronic fatigue, it causes widespread pain, bladder problems, IBS, stabbing nerve pains, heel pain, headaches, leg cramps, muscle twitching and spasms, restless legs, nausea, tinnitus, vertigo, brain fog, fatigue, sleep disruption, stiffness and tenderness of muscles.

You may also experience TMJ – temporomandibular joint disorder, facial and neck pain, and stiffness, stress and anxiety. It’s a long list of symptoms and I may have omitted some. Combine just a few of these with debilitating flare ups when your whole body seems to be under attack, daily life becomes extremely difficult.

People who suffer from fibromyalgia are often perfectionists and tend to push themselves to the limit, particularly on a ‘good’ day. There’s a sense of urgency and possibly guilt, but fibromyalgia will decimate you with a massive flare-up if you don’t heed your body’s warning signals.

Managing Fibromyalgia Naturally, and Fibromyalgia Ireland, are just two of many online support groups. Connecting with other people who have fibromyalgia can be reassuring. Every one’s story of how Fibromyalgia affects them and what treatment works is different. Here is one person’s story.

THE ABC CONDITION

“Imagine having the worst possible flu all the time. Imagine not being able to make plans as you don’t know if a sudden flare-up may flatten you. Imagine trying to conserve what little energy you have for the most important aspects of your life, not always successfully. Imagine sleep broken by muscle spasms and trying to get by on 4 hours of sleep.

Pain becomes a daily part of your life, some days worse than others, but the good hours, day, or days, you grasp greedily and try to cram in all the stuff you’ve neglected. I call it the ABC condition. Getting from A to B to C relatively easily is so often not achievable. Pushing yourself forward because you have no choice exacerbates the pain. Exhaustion makes your muscles weak. Your mind is screaming – Move! Move! Your body refuses.

I’m walking down the road feeling moderately good physically and mentally, congratulating myself on having an awesome start to the day.

I’m in the supermarket doing my weekly shop.

I arrange to meet a friend for coffee.

An hour later or even less, I’m hobbling as pain attacks one or multiple parts of my body. Overwhelmed by the pain and total sudden fatigue, I come to a halt wondering where the nearest bench is. I look ahead. The road appears unending. How will I get to point B?

Overwhelmed by the pain and fatigue I drop my shopping basket and somehow shuffle out of the supermarket.

Overwhelmed by the pain and fatigue I cancel the coffee date with my friend. I feel guilty and berate myself for being so weak and giving in, so I push harder and harder resulting in a severe flare-up of symptoms that seem insurmountable.”

A FEW TIPS

There is no ‘one size fits all’ type of pain relief or treatment. Osteopathy and other treatments exacerbate the condition for some people, whereas it helps others. Equally, physiotherapy can help providing you find a physio who understands the condition.

The same applies to getting a massage. The last thing you need is a masseuse digging repeatedly into sore points. A gentle aromatherapy massage that involves no kneading of muscles or prodding of any kind is best. However, your body might be too tender to even consider a massage.

Try these few tips at home. Add one or two cups of Epsom Salts while the bath water is running, and soak for 20 minutes or more. Make your own pillow spray by adding 10 drops of lavender oil to water. It’s relaxing and comforting.

Sitting in a jacuzzi and treating your muscles to hot jets of water is very effective. However, the heat may not be beneficial for some people. It’s a hit and miss journey of discovery trying to find what works.

SPASMS

These can occur at any time – in your legs or back. Fibromyalgia makes one feel socially inept. If you’re at work or out with friends you wonder how you’re going to get up and move without swearing or hobbling. You may feel embarrassed and try to laugh off your inability. The spasms are so painful you want to cry, but no-way will you give in. You tell yourself that it will pass. Just get moving. Usually it eases, but…. There is always a ‘but’ with fibromyalgia.

Long-haul flights, long car or bus journeys usually cause restless legs and spasms. You resent that creeping feeling which leads to twitches to full-on jerking movements of your legs which are painful and exhausting.

A spasm in the trapezius muscle is extremely painful and makes it difficult to sit or lie down. Quite often, this occurs as a result of an injury. Generally, finding a comfortable position with fibromyalgia is quite often impossible.

REST AND SLEEP

You would expect rest and sleep to ease your symptoms, but fibromyalgia refuses to obey this order. You’ve taken your medications, including magnesium, but your muscles go into spasm.

When you go to bed you make sure your neck is supported and often have your legs raised to alleviate restless leg syndrome. Using every mental positive affirmation and relaxation technique, you fall asleep. Thirty minutes later you wake up. Your legs are twitching. You feel so exhausted you try to ignore it.

The twitches are now full-on spasms that make your legs jerk painfully. Somehow you get out of bed. This involves a roll which is extremely difficult as by now your back is in spasm. Lying precariously on the edge of the bed trying to get one foot on the floor is not safe, but you can’t sit up or bend your back. Often your body doesn’t get the message and you may fall out of bed. Not the best scenario for anyone, especially Fibromyalgia sufferers.

You have to get up somehow. You know that if you can walk up and down for fifteen minutes or more it will relieve your restless legs. Getting from A to B is now a battle you are determined to win. Eventually, you make it. Although you can barely move and the pain is screaming at you to stop, you start to walk up and down. You are so tired you could fall asleep upright, or you wish you could. Up and down you walk slowly, methodically, hoping that fifteen minutes will be enough and that you don’t have to do this for at least an hour.

Eventually, you crawl back into bed and fall asleep. Two hours later you wake up in severe pain. Again you whole body is in spasm. You do a mental check through all your muscles wondering what’s the best way to move and how. Regardless of the pain you have to change positions.

You stretch your aching arms above you and somehow grasp the headboard using it as leverage to help you move, not an easy feat as your hands hurt. Changing position in bed involves what I call ‘labour-pain,’ including all the guttural sounds you used when giving birth, except now you’re trying to dispel pain and not give birth. Gas and air where are you?

TREATMENT

It takes time to find a combination of medication that works for you. They all have side effects ranging from grogginess, tendency to fall over, suicidal thoughts, weight gain, and stomach problems. Everyone’s reaction is different. What suits one person does not suit another.

Attending a Pain Clinic is beneficial. Generally, the staff are familiar with Fibromyalgia and can prescribe suitable medication. Steroid injections into particularly sore points may initially cause a flare-up, but that settles in a few days .

Lidocaine pain patches are beneficial and also Hemp patches. Many people find CBD useful. Another option is a Lidocaine infusion which generally gives 3 months of ease – not totally pain free, but for you a miracle.

Gentle stretching and exercise – but do not overdo it.

Pain Management Sessions run by medical professionals are informative, especially the advice to stop hoovering half-way. In other words, don’t push yourself to finish everything at once. This is not an easy option in the workplace.

Kings College Research on Fibromyalgia

According to a new study, Fibromyalgia is probably a consequence of autoimmune problems, a disease of the immune system. This will impact well on treatment and give hope to millions of people with this illness. The attached link is very informative.