Tag Archives: chronic widespread pain

Good Morning?

The world is awake. I can hear bird song and traffic.

The pain starts in the pit of my stomach, churning and rolling before weaving through my limbs like a heavy, lumpen weight and collecting in my hands and feet.

There are things to do, places to go. “Get up!” shouts my brain. “F off,” grumbles my body.

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Back to the Drawing Board

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I’m just coming out of a major flare-up. It completely floored me, leaving me in bed and unable to function for 3 days. It felt like an elephant was sitting on my hips, a rat was gnawing it’s way out of my head, a hot spring was bubbling in my belly and someone was hitting the bottom of my feet with the back of a cricket bat. My temperature regulation was all to pot so I alternated between being very cold and shivery and overheating and pouring with sweat. No vomiting though! A major breakthrough (I say hopefully) and relief.

I haven’t had a flare since late October last year and had been feeling pretty pleased with myself! Ha – serves me right for being smug. I have been seeing a gastroenterologist recently in an attempt to get to the bottom of why I’ve been suffering from bouts of vomiting (and corresponding headaches) every three to four weeks. (So going almost 10 weeks without a flare has been a great relief!) I’ve lost almost 2 stone, which has been nice – but it has been an extreme way to do it. Long story short, after lots of investigations involving cameras, scans, needles and sample containers it was decided (by the gastroenterologist) that I was suffering from migraines and needed to take migraine and anti-sickness medication, and to see a dietician about going on an exclusion diet in order to find out what the triggers were.

My GP prescribed the medication but could not refer me to a dietician as our CCG doesn’t fund this type of referral. So, with some advice from my GP (“don’t exclude too much at once as it will make it difficult to stick to”) I tried my own version of an exclusion diet. The internet gave me some ideas about foods that might cause my migraines so I decided to exclude cheese, chocolate, alcohol, citrus fruits, eggs and mustard from my diet for three weeks before, slowly, introducing them back, one at a time. It didn’t take me long to feel better, and to be honest after about two weeks I forgot I wasn’t eating cheese and had some! I love cheese.

The bottom line is that mustard makes me feel very ill! One of the reasons I had suspected cheese might be a culprit was because after eating cheese scones (my go to treat for afternoon tea!) or meals with a cheesy sauce I would often be ill. Turns out it’s not the cheese but the mustard added to enhance the cheesy flavour.

Most people have been a tad incredulous when I’ve told them. “Do you eat a lot of mustard?” has been the common enquiry. Well, yes I do – did! I use it in my cooking as a flavour enhancing ingredient. And it is in a huge number of common groceries – mayonnaise, most salad dressings, coleslaw, lots of supermarket deli salads, frozen fish, curry powders and pastes, ham, tartare sauce; to name a few.

Mustard is one of the common allergens that have to be highlighted under the European food labelling directive so it’s relatively easy to spot in the list of ingredients on food packaging – it appears in bold type. And I’ve banished mustard powder from my larder.

So if I’ve cut mustard out of my diet what has caused this latest flare? Well it could be one or a combination of several things.

1.       Overdoing things? It has been a very busy Christmas and New Year so I haven’t been pacing myself with my usual care. Also I have neglected my exercise routine – I’ve not been doing any strengthening/stretching exercise for several weeks and my daily walks have not been daily, and have been significantly shorter than normal.

2.       A reaction to the massage and reflexology session I’d had the day before my flare-up began?

3.       Dehydration? I didn’t drink very much water the day before. And I am always told to drink plenty after a massage.

4.       Something I ate? We ate out the night before the flare started. I was assured by the restaurant that they didn’t use mustard in their cooking but was it a hidden ingredient in something else they use? I visited a friend just before Christmas who had made soup. She hadn’t used mustard, however she had use some tikka masala paste and when we checked the ingredients in the paste we found mustard. So no soup for me. (And it smelt delicious!)  Or is this flare a reaction to another ingredient/spice?

5.       Nothing? It was just time for a flare.

My post-flare plan of action? Go back to the drawing board! I need to pace myself, restart my exercise regime – gently and build back up to pre-Christmas levels – continue to monitor what I eat and how it makes me feel, and stay hydrated. Wish me luck.

Time to Reflect…

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“Look after the senses and the sounds will look after themselves” from Alice’s Adventures in Wonderland by Lewis Carroll.

I’m struggling a bit at the moment if I’m really honest.
My pain and fatigue levels have gradually increased as the days have got shorter and the weather has become colder and wetter. I am finding it difficult to get out of bed each morning and to get going each day so I don’t feel that I’m making the most of my day.

It is time to take stock. When I’m feeling well I find it very easy to believe that the fibro has disappeared and the HMS doesn’t affect me so I don’t need to employ the self-care strategies that have helped me to feel so well.

So I am revisiting the notes I made at my Clinical Psychologist appointments, starting with the first appointment.

My first visit to the psychologist, Emma, was a revelation. I had waited 9 months to see her, but it was well worth the wait. She listened with compassion and concern. She had heard similar stories before, many times, and I didn’t have to defend myself, I just explained.

Long story short we discussed what I did, on a daily basis, to deal with my pain and symptoms. We discussed how I felt about the pain and what I found worked to help relieve symptoms. No judgement.

I came out of the appointment feeling happier than I had felt in months (if not years) and with some homework to complete before my next appointment.

My homework was to accept that I suffer from HMS and fibromyalgia so treat myself with compassion (!) and to pace my activities (?!!). Emma explained that I had to imagine that my energy was stored in tank, a bit like a petrol tank of a car. Resting and being kind to myself add energy to the tank, being active would (obviously!) use energy. I was to try and keep my fuel tank over half full.

So rest was to be my new best friend! Having spent most of my life ignoring what my energy levels were telling me and using rest as a reward for finishing a task, or list of tasks, so keeping my tank near the empty mark this was going to take quite a mind shift to achieve.

I plotted my energy levels throughout each day for a week on a grid, recording my level as a score out of ten with ten being full of energy and 1 being no energy. At the end of the week I could see a pattern emerge. That pattern is still the same today. Low energy in the morning, dipping during the middle of the day and rising to the highest point towards the end of the afternoon. The pattern hasn’t changed, just at the moment the scores don’t rise much above 5! Low energy understandably means high fatigue levels, and at the moment also coincides with higher pain levels.

So my challenge this week is to accept that my pain and fatigue levels are high and to treat myself with compassion. Also to pace my activities. It is easy to try and cram too many tasks into a day and not to leave rest times in between. I know the times of day that my energy levels are likely to rise so, in theory, I can plan appropriate tasks for those times. In theory!!

Monday Morning Ritual

Medicine is a science of uncertainty and an art of probability – William Osler

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I have just sorted my medication for the week. It’s a job I do every Monday, putting the tablets I will take each day into my pill organiser. Using this system has two benefits. The first is that I can see when I am going to run out of a particular tablet and order my repeat prescription in good time. The second is that I can be sure that I have taken my tablets each day, an important consideration when brain fog descends! I have on several occasions got part way through the day and not remembered whether I’ve taken my tablets that morning or not. If I have taken them, but believe I haven’t, I could take more unnecessarily. Doing so once or twice probably wouldn’t be a problem physiologically, however it is wasteful, adds to my expense and can be a source of anxiety.

It also means that when I travel I don’t have to carry lots of bottles and packets, just one small(ish) organised box.

I take some medication prescribed by my doctor’s and I take some supplements that have been recommended by my doctors and/or fellow suffers.

This is what I take:

Prescribed by my GP and Rheumatologist – Iron, Vitamin D, Amitriptyline.

Supplements recommended by my doctors and/or fellow sufferers and my own research – magnesium, aspirin, vitamin B12, psyllium husk capsules.

I take paracetamol and ibuprofen as needed to combat pain from inflammation and injury.

I have found that this regime helps me to maintain my energy levels and to cope with the pain and fatigue. I have considered each medicine/supplement in more detail below.

NOTE: I take these medicines/supplements after discussion with my doctor. This regime is personalised to me and helps with my symptoms. Other people may have different symptoms and different reaction to these medicines.

Iron.
I’ve been prescribed iron on and off for most of my life. I took it for the first time as a teenager, then with each pregnancy and several other times in between. I went to my GP (family doctor) about 6 years ago as my hair was falling out, I felt tired and unwell (again). Blood was taken and tested. My thyroxine levels were fine (hair loss and tiredness are symptoms of impaired thyroid function) but my haemoglobin levels were on the low side of normal and my ferritin levels were very low. Ferritin is a protein that stores iron. Low levels are indicative of iron deficiency. I started on a course of iron tablets, and after several months my levels rose so I stopped taking them. A couple of years later I found myself in a similar predicament, ferritin levels were found to be very low again so iron tablets were prescribed. I’d never liked taking iron tablets. They can upset your stomach, make you constipated and turn your faeces black. Not pleasant!! So I have to admit to not taking them as regularly as I should but slowly my ferritin levels rose back to normal levels and with great relief I stopped taking the tablets. A little over two years ago, when my fatigue and pain levels reached an all-time low (or high!?) I went back to my doctor. My blood was checked and, yes, you’ve guessed it, my ferritin levels were low. Very, very low. I started back on the tablets.
My GP prescribes ferrous fumerate, which are kinder on the stomach than other forms. I now take them regularly and am now used to them! When I started taking them I took 1 325mg tablet 3 times a day with meals. My ferritin levels are now a healthy level, however going on our past experience my doctor and I agree that I should continue to take them to maintain my levels. I now take two a day, morning and night.

Vitamin D

My rheumatologist also took copious amounts of blood to test and found that I was also very deficient in vitamin D. He prescribed vitamin D3 capsules (800iu) which I take twice a day.

My GP tests my blood regularly to monitor my ferritin, Vitamin D levels and calcium levels. (Vitamin D supplements can increase the amount of calcium in your blood.)

Amitriptyline

My GP prescribed this for me when I was diagnosed with fibromyalgia by my rheumatologist. Amitriptyline is often prescribed for neuropathic pain. It was originally used as an antidepressant with doses of 150mg and above, however it’s not a very well tolerated drug at high doses so isn’t often prescribed as an anti-depressant now. Lower doses of amitriptyline however have been found to be effective in treating neuropathic pain. I started taking 10mg of amitriptyline and slowly built up to 30mg over a few weeks. The tablets haven’t really had any effect on my pain levels, but what they have done is help significantly with my “irritable” bowel and gut issues and my migraines. Amitriptyline is used to help in a wide variety of chronic illnesses including migraines, irritable bowel disease, overactive bladder, poor sleep and pelvic pain. I did wean myself off them at one point (I did it very slowly over about three months) but found that my gut and migraine symptoms returned after a week or so. I now take 10mg in the evening which is enough to keep my digestive tract working and reduce my migraine attacks significantly, without making me too sleepy.

Magnesium.

I take a magnesium tablet twice a day. This hasn’t been prescribed by my doctor but I have discussed it with him. Shortly after I was diagnosed with fibromyalgia I went to a talk given by Dr Kevin White (which I document here). I sat next to a very nice Doctor who mentioned that magnesium had a very beneficial effect on muscle cramps and pain. During my subsequent research I came across a publication health for medical professionals in the US which recommended prescribing 300mg magnesium twice a day to prevent migraines. I thought it was worth a try. I am convinced they help.

Aspirin.

About three years ago my GP suggested that I take 75mg aspirin a day as a way of preventing headaches and migraines. I’m not sure how much they helped with those issues but I’m still taking them. There has been a good deal of press coverage about the benefits of taking aspirin that I may as well carry on.

Vitamin B complex with B12.

Following a discussion, on one of the many hypermobility syndrome support groups on Facebook, about fatigue I decided to try taking a vitamin B complex supplement morning and night. I think they are helping, I’ve been taking them for about four months now and my energy levels have been reasonably good.

Psyllium husk.

I have been using psyllium husk for years to help with irritable bowel symptoms. My GP prescribed fibogel (ispaghula husk) sachets but I struggled to drink them and they caused stomach cramps. My research about IBS suggested that psyllium husk might be a better option. I take a psyllium husk tablet (from Holland and Barrett) with breakfast and supper. They are helpful. I notice a difference if I don’t take them for a few days.

I’ve looked at other supplements such as co-enzyme Q10, zinc and garlic. Vitamin C often comes up on forum discussions. However I don’t want to overload my body (or my purse) with supplements and, at the moment at least, I appear to have found a regime that works for me.

I would be very interested to hear about your medicine/supplement regime. What works for you and what doesn’t?

E is for educating yourself.

I was diagnosed with hyper mobile joints over 18 years ago but all I was told at the time was that it could cause joint pain. I was diagnosed with Hyper Mobility Syndrome (HMS) and fibromyalgia three weeks ago, following a prolonged period of chronic pain, severe fatigue,  poor memory and problems with word retrieval. Then four days ago I received a letter from my rheumatologist to say that I also have a vitamin D deficiency. Interestingly FM, HMS and Vitamin D deficiency cause very similar symptoms! – Chronic pain in joints and muscles, fatigue and cognitive dysfunction.  So there are three possible causes for my predicament!

I have found the following sites very useful in my initial research – NHS  and Arthritis Care. Both give a comprehensive list of Fibromyalgia symptoms and outline the ways in which it is treated.

Similarly the NHS site about Joint Hyper Mobility Syndrome is a good place to start any research about HMS.

For vitamin D deficiency you could start with the patient.co.uk  website.

At present I am finding the chronic fatigue the most troubling symptom. I have been struggling to get to sleep at night, despite feeling exhausted, and even though (when I eventually drop off) I sleep for eight or nine hours I never feel refreshed when I wake.  Dr White’s talk at the fibromyalgia awareness event last week gave me a clue as to why this is happening.

Researchers have found that patients who suffer from fibromyalgia often suffer from disrupted sleep, particularly phase 4 sleep – the deep restorative part of the sleep cycle. In fact the NHS site states that it is possible that disturbed sleep patterns could actually be a cause of fibromyalgia!

Sleep occurs in cycles, each cycle consists of 5 stages and lasts about 90 minutes. Phase 1 is the transition between waking and sleep. It lasts about 5 minutes. Phase 2 is light sleep. This lasts between 10 and 25 minutes. Phase 3 and 4 are the periods of deep sleep. Brain waves are slow and blood is directed away from the brain to the muscles. REM sleep is the last phase of the cycle – rapid eye movement sleep (when we dream).

Deep sleep stimulates the production of Growth Hormone (GH), which plays an important role in repairing and keeping muscles healthy, improving bone density. It affects how our bodies store fat and is needed for normal brain function. Disrupted deep sleep leads to disrupted GH secretion. Some practitioners suggest that this lack of GH could be a contributing factor in producing the pain and fatigue of fibromyalgia. Disrupted sleep also means that fibromyalgia sufferers do not feel refreshed when they wake up and struggle to get up each morning.

A is for accept responsibility for your own health so I am currently trying to improve my sleep. There is lots of advice on the internet on good sleep hygiene. The University of Maryland Sleep Disorder Centre has some good advice.

Improving my sleep hygiene alone didn’t really make any difference so I downloaded a couple of free apps – Deep Sleep (Darren Marks) and Relax Melodies Seasons (Ipnos Soft) – and for the last fortnight I have been using them to help me sleep. I find falling asleep very easy now and enjoy using the apps. I am also waking up feeling marginally more refreshed.

HelpGuide.org has lots of information about sleep and sleep cycles. They suggest that you set a wake up time that is a multiple of 90 minutes (the length of an average sleep cycle) to avoid waking up in the middle of the deep sleep phase as waking up at the end of a cycle when your body and brain are nearer wakefulness may make you feel more refreshed. I am going to try it tonight! I am aiming for 7and a half hours sleep. It would be lovely to think that I could wake up feeling refreshed tomorrow. I am thinking positively J

I have been given a name for my pain!

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I have recently been diagnosed with Fibromyalgia. I also have Joint Hypermobility Syndrome. Despite the fact that the diagnosis was given to me by a Consultant Rheumatologist, following a referral from my GP (who suspected I had fibromyalgia), I have been told that there is very little they can do for me. In fact, from my first cursory glance at the media and literature I got the distinct impression that my symptoms – the muscle and joint pain, severe headaches, balance issues, poor memory and impaired thinking – were all “in my head”.

Luckily I stumbled across the FibromyalgiaAssociationUK website  which inspired me to believe that it IS possible to manage this disease and convinced me that I needed to take personal control of the management process.

This blog is to be my record of discovery – about what fibromylagia (shortened to fibro or FM) is, possible ways in which it can be managed and which “treatments” help me. It is my way of remaining positive and active and taking control.