Fibromyalgia Action UK

This is an emotive subject for me, I feel as though I’ve come almost full circle since having my daughter in 2016. I don’t look at my first pregnancy with fond memories - because I was debilitated by hormonal migraines, and by 16 weeks I was on crutches with a condition called Symphis Pubic Dysfunction where the ligaments in your pelvis become stretchy making walking painful, this condition later saw me in a wheelchair. (Hang in there, there’s a fibromyalgia related point to this, I promise.) At 36 weeks I was diagnosed with preeclampsia, I had to be hospitalised and induced, I had to have my waters broken manually and when my daughter finally arrived she was born withdrawing from antidepressant medication I was taking in pregnancy.

It was after my daughter’s birth that I was officially diagnosed with Fibromyalgia, even though I had suffered with chronic pain for around 12 years prior. I’d had four investigative surgeries and a long struggle, finding little relief and feeling like I was going insane. If you have FMS you’ll likely know diagnosis can be a long and gruelling process. I’m now pregnant with my second child. When I found out I was pregnant the second time I was taking 8x the amount of medication I had been taking in my first pregnancy. So naturally I’ve been worried, it doesn’t help that we’re amidst a global pandemic and getting a doctor’s appointment is nigh on impossible. It feels ominous and nerve wracking because it is, being pregnant with fibromyalgia is difficult. Pregnancy fatigue on top of flare up fatigue will have you lying down more than standing up. Hormonal changes can affect fibromyalgia and I find because I also suffer from PMDD I’m extra sensitive to hormonal fluctuations, so allergies and allodynia have both been present pretty much since conception. Along with mood dips and brain fog of course.

I’ve been weaning off narcotic pain medications like Tramadol and I’ve had to reduce the amount of medication I take for migraine and nerve pain. It’s not been an easy 17 weeks and I would be lying to you if I said your fibromyalgia won’t be affected by your pregnancy and visa versa. Some women do claim to get a reprieve of symptoms during pregnancy but so far that has not been the case for me. That said, I still feel positive and I’m doing everything I can to have a healthy and hopefully more enjoyable pregnancy.

Some tips that I’ve found useful so far are things like: Getting yourself stocked up with safe pain relievers, have a box on hand with your hot water bottle, your ice packs and your paracetamol. I’ve also recently been using an acupressure mat for generalised body pain and acupressure clips for migraines. The likelihood is you’re going to need these things even before you start showing, so it’s important to have them well stocked for the days you don’t feel able to do much. Invest in a pregnancy pillow, even if you’re not pregnant I find these amazing for my sleep and nighttime comfort. They really help me get comfortable to read or watch tv in bed and you’ll likely be doing a lot of that (even more than usual.)

Tell someone close to you, someone you feel able to lean on for support. Of course, it’s likely you might be keeping schtumm in the early days but if you do feel able tell a close friend or family member do that, so they can help lighten the load when necessary. Can you ask someone to do the school run for you? Or drive you to your doctors’ appointments when that fatigue plays up? Sometimes just having someone to talk to can be really beneficial. In my case I told my boss as soon as I found out, I was only 4 weeks pregnant but I knew I would likely need extra support with work, particularly because the reduction in medication means migraine has been present for most of my pregnancy this time. Thankfully my work has been accommodating. I’m working from home which is helpful, but remember your employer has a duty to make reasonable adjustments for you during your pregnancy (as they do for disabilities) so if you need to change your hours or take time off for appointments don’t be afraid to ask.

If you live with Fibromyalgia you will know that the key to management is often down to pacing ourselves, whether those things are easy or practical is another story all together! During pregnancy this is even more important. Make time for rest, do not beat yourself up for needing time, it’s imperative for your health and wellbeing. Some people use exercise to manage symptoms of FMS and there’s no reason why you can’t continue to do this during pregnancy, in fact it’s encouraged. Gentle exercise that you feel able to do, even if it’s just a short dog walk or a home yoga session, you may find this helps to keep you moving and your pain down. It’s important to note though, that you don’t want to over do it either. Go at your own pace and stop if it feels too painful.

Getting enough rest in the early stages of pregnancy is crucial. Your body is going through endless changes and you will need time to adjust. I recommend resting at every given opportunity whether it means climbing into bed on your lunch break or going to bed straight after dinner, maybe even both. Do it. Pregnancy can have a negative effect on your joints which can make telling the difference between pregnancy symptoms and fibromyalgia symptoms hard, but you know your body best, don’t be fobbed off by other people downplaying your symptoms. It’s so vital you keep yourself as well physically and mentally as you’re able. That means if you need to rely on medication, please try very hard not to beat yourself up. A happy, healthy mum is the very best recipe for a happy and healthy baby.

What I have found this time around is the support available to me seems to be better. I have a mental health midwife helping me manage my concerns. Chronic illnesses like FMS have a naturally detrimental effect on our mental health which pregnancy can exacerbate, so getting the right support is necessary. Don’t be afraid to be honest about your pain and how you feel, nobody is judging you, you’re doing what you need to be able to safely and comfortably house another human being and, in my experience, medical professionals want to encourage that. There are also online support groups available to enable you to meet and talk to other expectant mums who might be having similar experiences.

Whatever you’re feeling during your pregnancy you can guarantee there is a mum out there who’s been through similar. Living with FMS is no walk in the park and neither is being pregnant for everybody, but as an FMS sufferer already you’ll likely find yourself adapting and adjusting as you do in everyday life. It may not be an easy road to travel, but it’s definitely one that’s worth it.

With the release of the NICE guideline on primary chronic pain, we can start to examine the impact it may have on patients. It is our view that the fibromyalgia community will see this as a significant step back – both in their treatment options and their ‘legitimacy’ within the health service.

In devising the guideline, the committee was looking to find best practice; yet was selective in the evidence it considered in scope. We feel that patients, with their body of first-hand evidence, are being overlooked.

There are patients who can remain in employment, maintain a good quality of life, and increase their activity levels, thanks to treatment protocols that will now be unavailable to new patients. Some of these treatments help patients to such an extent that, in time, they can reduce these medications and leave them behind.

While the committee recognises that there could be sub-groups that these medications are indeed effective for, the lack of understanding of chronic pain means that these sub-groups will be side-lined, together with everyone else.

Diverging views

EULAR revised guidelines for fibromyalgia gave a ‘weak for’ rating to recommendations for Amitriptyline, gabapentinoids, SNRIs, Tramadol, Acupuncture, CBT, Hydrotherapy, meditation/mindfulness, and a ‘strong for’ in relation to exercise. These guidelines are now at odds with the chronic primary pain guidance from NICE.

In addition, evidence that was included in Cochrane reviews was not considered in the committee’s initial scope of evidence. A paper entitled "Pregabalin for treating fibromyalgia pain in adults" said: "We found high quality evidence that pregabalin at daily doses of 300 to 600 mg produces a large fall in pain in about 1 in 10 people with moderate or severe pain from fibromyalgia. Pain reduction comes with improvements in other symptoms, in quality of life, and in ability to function."

Further, the NICE guideline has excluded large, high-quality, randomised, double-blind trials that have been used to judge evidence of pregabalin efficacy and safety in fibromyalgia – and were acceptable to the FDA, EMEA, and Cochrane reviews. This has resulted in a more limited pool of evidence and ultimately means that UK patients with fibromyalgia have fewer treatment options than if they lived in Europe, America, or other regions where that evidence pool was considered sufficient.

Unintended consequences

Chronic pain is not an easy subject for the NHS, NICE or health professionals. We can appreciate the need to reduce the over-prescription of opioids and the need to engage in meaningful conversations with patients about their chronic pain. Patients will appreciate that conversation and being listened to!!

We are grateful that people on existing treatment regimens will not, in theory, face change under this guideline, but we are sure that some will be dreading their next medication review with their GP. And we have already heard of doctors whipping treatments away from patients without any tapering or explanation.

Moreover, the service delivery in relation to chronic pain is already dreadfully under-provisioned and this guideline only reduces options even further. The guideline also favours treatments such as group exercise and acupuncture that a) cannot be provided long-term due to NHS cost pressures and b) cannot be undertaken in the patient’s own home. Requiring patients to travel to receive treatment does not promote inclusivity or equality – some patients will not be able to afford to travel, others will not have the physical ability to travel.

The bottom line

People with fibromyalgia have always had an uphill struggle to be diagnosed, to be treated and to be respected for what they are going through. The fibromyalgia community believes that this guideline will be a step back in how the medical profession views them.

Of course, the guideline will certainly save some pennies on the NHS budget in the short term, but it will also result in losses to UK plc tax revenue as patients will not have access to the treatment(s) they require to continue employment.

And while this guideline is positive in its promotion of non-drug therapies, the committee’s blanket approach to all primary chronic pain and the removal of working treatments from some within our fibromyalgia community is not helpful. In fact, we believe it will be counterproductive in the short and longer-term – for patients, their families, their healthcare providers, and the UK welfare system.

Regards

Des Quinn

FMA UK Chair