My Progress: Fibromyalgia a couple of months on after diagnosis

 

I thought you might like to know how I’m doing with the whole fibromyalgia thing?

Lots of people have asked how I am, but it’s really difficult to say in 1 sentence, and I feel boring if I describe it in full.

I’ve learnt loads more about it and have created a static page which I’ll use to list the things I discover and all my posts about FMS.  Please pass it onto anyone you know with FMS, as it’s a tricky syndrome and it helps for us to connect with each other.

And I’ve definitely made progress, but also taken a few steps back as well.

It kind of depends on the day, I’m pretty much two different people at the moment:

 

 

Good Day Me:

I’m up, and once I’ve had a shower I’m pretty perky.

Curly Headed Boy thinks that I look healthier and happier than I did before.

Life is much easier now I’m not trying to work as well as look after two young children, plus sort out my health and I know that I can pick up the paying side of my work again when Little Dimples does to school in 1.5yrs.

I’ve cut down my social media usage, and it’s really not so bad; I realise that there was panic about ‘always being around’, which was daft.

I’m just blogging about once a week, and my stats don’t seem to have gone down (stats are mega important to us bloggers).

I’ve started actually reading books again, which is lovely.

I’m getting time to make sure that the most important things are done (i.e. kids) which has reduced my stress levels loads, and I’m getting a chance to take some time out to think about those long questions like ‘who am I now’ etc.

I’m grateful I was diagnosed so early, so it hasn’t become too entrenched, and I’m sure that with some determination, lots of investigations and some trial and error I’m going to atleast manage it, if not sort it out totally.

My right arm doesn’t hurt any more, so just my left arm, back, neck, shoulders,  jaw, chest pain, left/right leg and both hips to solve; it’s a step in the right direction.  (I reckon this is down to the Amitriptyline).

The Dr increased the drugs, and am hoping that my left arm and chest pains will follow suit really soon, which would mean I can pick up the kids without pain.

My IBS is managed with greater strength Optibac probiotics and a nearly healthy lifestyle (IBS is a symptom of FMS and mine got worse when I became ill).

I’m really glad the surgeon decided that my TMJ (jaw pain on right hand side) wasn’t worth operating on and that a mouth guard wouldn’t work, plus the drugs have reduced the pain and clicking a lot and I can chew most things now.

The Fibro-fog has improved with a bigger better quality dose of Omega 3, 6 and 9 and I’m finding the alarms work well on the electronic calendar.  I have a snazzy small filofax so I can take my To do’s with me everywhere.

I feel stronger with the weekly studio (machine based) pilates classes and better quality vitamins (I wasn’t taking the full recommended dose).

Plus the Pilates guy does something called Osteolates (Mixture between osteopathy, pilates, and acupressure) which is fab for the myofacial pain (basically being in pain in the Fibro trigger points, sets the rest of the muscles off).

I’ve found the meditations using Shamanism (basically meditation to drum music) really helpful to reduce stress and worries and rediscover some of the ‘new age me’ that has taken a bit of a rest.

I think that my sleep is slightly better quality on the Amitriptyline (people with FMS don’t get any level 4 sleep) and I’m less affected by the full moon (I also have loads of ideas for sleep problems here if you suffer too).

The doctor agreed to checking my Vitamin D levels and as I was low (should be 75, was 42), they have given me a 2 month prescription of Vit D3 liquid gell capsules (best type); shame you can’t get a holiday in the Caribean on the NHS!

He also agreed to check my hormone levels as my periods were messing around a bit (very long) and it’s definitely not the perimenopause or PCOS causing the problem, so I don’t have to add anything else to the worry list.

I’ve found out that the FMS is due to the Thalamus gland, so the behavioural kinesiology (Resonance Repatterning) that I’ve been using to tackle the emotional/mental causes has been definitely aiming at the right direction, and I’m less confused by the huge number of symptoms to work through.  (The thalamus gland affects the pain signals in the body, so basically we feel more pain and there is more Substance P in our bodies than a normal person).

I’ve also found out that we produce more lactic acid more quickly than most people, so I’ve added Magnesium to my list of supplements in the morning and bottles of deep freeze to my bathroom cabinet for when it’s really bad; this is how come the amount of exercise we do is limited, as we can also injure ourselves more easily and take longer to heal.

I’m really ‘lucky’ that the Big Hairy Northern Ones contract was terminated early, as just by doing the majority of the school runs, I’ve been able to rest a bit more than I would usually have done which is helping me recover.

Ironically having young kids is helpful because the constant picking up of stuff and putting things back in the right place warms up my muscles and makes the rest of the day easier; the problem with Fibro is that you must move even though it hurts, otherwise it hurts more (you just can’t move too much, it’s a tricky balance).

I’m decluttering my house even more than I used to, as everything needs a place and the ‘system’ needs to work so easily that even the family understand it when I’m at my worst.  So things are looking pretty good around the house.  Give me 6 months and even my photos will be sorted; result!

I reckon I’m lucky that my diet was already pretty healthy, and I wasn’t using many products with chemicals in them due to my rosacea and probably only needs a little revamp and a good detox at some point, otherwise my symptoms would probably be worse (sugar, chemicals and preservatives are not FMS’s friend).

The Dr has referred me for some CBT (cognitive behavioural therapy) to help with pain management, and my first assessment was with a woman who has FMS, so she was great and reckoned that by teaching me some ‘pacing’, I’ll be able to avoid flares more easily.

I’m overwhelmed and enthusiastic about all the support and ideas I’ve been getting off so many people.

I’m sure that this journey will help me reinvent myself, and reach out to even more Mums with my books than before.

I’m at last remembering to take care of myself much more than I used to; I know I tell you lot to take care of yourselves, but I might not have done it enough myself, you know the old saying ‘Healer, heal thyself’.

I’ve got a plan and I’m working through it slowly, step by step, to a more balanced lifestyle and I’m trying to treat the Fibromyalgia as a guide, rather than an enemy.

 

 

Bad Day Me:

Christmas was awful for Fibro-flares, even though I tried to take it easy, get everything prepared beforehand and the Big Hairy Northern one always cooks Christmas dinner.  One flare was mainly just pain, but the other was a full on depressive yukky downer.

When I have a flare up God it hurts, apparently Fibro pain is worse than Rheumatoid arthritis (how they know I don’t know); it certainly doesn’t even notice ibuprofen.

My head is fuzzy, and I mourn the previously competent woman who could remember things and not rely totally on an electronic calendar with alarms.

I’m exhausted; I just want to hide under my duvet and not get up.

My hips burn and I wan’t to itch them, but then know I will get bruises the size of a dinner plate.

My knees hurt so bad when I’m getting up and down from the floor that I feel like an 80 year old and find it difficult to play with Little Dimples or use the washing machine and tumble dryer.

I’m meant to be eating healthy food, but that is stuff like nuts and whole foods, which hurt my  right jaw like hell to chew.

My eyes are really problematic in the mornings and evenings, which is helped by my new glasses, but worrying as it is probably related.

This and the fact that I’m sometimes a little unsure of my balance and spatial awareness and have to take my drugs early to avoid a hangover, makes night driving and going out socially impossible; I was never a big socialite, but it makes me feel left out.

I’m scared that I’ll get crippled with it and bed ridden like the people I read on the forums; in fact I’ve banned myself from reading them now as they terrify me with stories of stronger and stronger drugs that eventually don’t work.

I’m terrified of getting ill, because that will mean a flare up in the pain, plus the likelihood that the rest of the household will get ill and need taking care of, so I’ll get tired and get more pain.

Curly Headed Boy isn’t taking the added responsibility well, or the fact that I just don’t have the energy to ask FIVE times for something any more.

I’ve realised that although I wouldn’t change the fact that I was a ‘young carer’ it’s not the choice I would have made for my children, and I worry about the affect on them.

I was falling asleep with the children at least 50% of the time, but since doubling the drugs I hardly ever get back down again to see the Big Hairy Northern One; that can’t be good.

One of my friends dumped me the week after my diagnosis because I did something a bit flighty and very fibro.

I feel like a wimp when I keep having to explain that I can’t do something.

Then I feel angry because people haven’t taken the time to understand that I’m limited in what I can do because I ‘look OK’.

Plus sometimes I feel that people expect too much of me because I’m normally so sorted and know all this psychology stuff; I’m not allowed to be grouchy or grumpy or make a mistake.

I miss the freedom of running even though I was rubbish at it, because it was so easy to fit into life and helped me keep my weight in check.

The Pilates is boring, but I know it’s helping, so I keep going.  I’d prefer a dance class, but know it would kill me at the moment; even aqua aerobics crucified me for a week and I can’t go in a pool unless it’s warm enough.  (Hopefully I can add Tai Chi or Yoga soon)

I’ve put on a stone in weight, I’m not yet at an unhealthy weight, but I’m gutted after all that hard work before losing weight and worried whether I’ll be able to keep it in check with all my limitations.

I wish I had a Mum who could sweep down and pop me in a duvet, play with the kids for the day, whilst making a stew and tidying the house (my actual Mum wouldn’t have been able to do this bless her, even if she was still alive).

I’d like to cry most of the day, but have so far only broken down in front of Little Dimples once, who was so kind I was gobsmacked.

I don’t understand why it’s not possible to do a big declutter/tidy of the house AND walk the dog.

I used a pedometer to try and maintain a steady pace each day and find that whereas I used to be able to easily work up to 10,000 steps in a couple of weeks, my body is now crucified by Lactic Acid over 5000 tiny steps after a month of trying.

I’m irritated by people finishing my sentences for me as I desperately search for the words that have disappeared into the recesses of my head; audition and anaesthetic are not difficult words after all.

I don’t tweet, I don’t Facebook, I don’t phone, I just hibernate.

I’m scared of trying things incase it makes things worse, and depressed about a life limited and controlled by an illness.

My second assessment with the CBT people the doctor referred me to was with someone much less qualified, and I could have basically chewed them up and spat them out; God help them if that’s the kind of person they think can help me.  I think that my problem is that physical pain is so tangible, that I’m finding it much harder to deal with that emotional/mental pain.

I have no plan, I just hope that when I wake up tomorrow, this flare will be over and I’ll be back to ‘Good day me’.

 

 

They are quite contradictory people aren’t they?  They aren’t really agreeing with each other on much!

I reckon I’m just about more ‘Good Days’ than ‘Bad Days’, but only just.

Hopefully in my Spring/summer update it will be a different story.

Remember to pass my blog onto anyone you know with Fibromyalgia please (and if they are close to you, maybe read my FMS page and other posts so that you can understand them more too).