Fibro planning (#fibromyalgia)

I can’t believe how fast time has flown by in the last few weeks. Planning my holiday starts early, I had bags etc. out two weeks ago and each day I’ve done a little bit of packing. Now that it’s nearly time to go I’m nearly done. Here am I saying ‘I’, but in reality there is two of us, actually three if you include our wee budgie ūüôā My experience of men and packing definitely doesn’t go well, and he’s great at so much of the other stuff I don’t mind. If I let him pack we’d need a lorry!

As luck would have it, it’s always been in my nature to be really organised and now that I have Fibromyalgia it’s good that I am as most things need to be planned well ahead. The unpredictability alone is a real pain in the ass and you always find you do more on your good days to compensate for the bad.

As I get the final bits done before we leave on Saturday, I’m aware that an appointment will be in the post for a lumbar MRI on my return. Having significant numbness etc. has resulted in my GP wanting to have it checked out. As most other investigations have come back normal I’m not unduly worried, but you never really know….

#Fibromyalgia and holidays

It’s that time of year again. I’ve been holidaying in the Highlands with my husband for over 20 years and I never tire each time I think about going back. We started with camping for several years, before managing to find various static caravans in people’s gardens. Around 10 years ago I found a lovely spot for us, again in someone’s garden but much more isolated and peaceful.¬†

There have been times when we’ve done nothing but hike up mountains and munros.¬† Then we spent a good number of years taking our mountain bikes, cycling some of the most amazing forest tracks and observing the most beautiful wild creatures of Scotland.

Now my highland holiday is a chance to recuperate, rest, switch off and chill. It’s not without its problems. It’s not the most comfortable holiday, the bed is uncomfortable for me and I can’t sit in the same position for too long.¬† But, to be honest, it’s no different at home. I take some extra pillows, a blanket, a heat pad and extra pain relief. I know no matter how much pain and discomfort I’ll be in, it won’t really matter. I can still rest, I’m on holiday from work, I can take as much time as I like to do things and if we make plans they can easily be changed.

Holidays are needed no matter what situation you are in because you are giving yourself a chance to be somewhere else; in body, mind and spirit.

Fibro doesn’t like to be on its own! #fibromyalgia

I was just pondering after putting up the photos I’d taken to reflect what Fibro means to me. ¬†Fibro likes to have friends, it doesn’t like to be on its own, I think it likes something to battle with. ¬†Many of us with Fibro will have other conditions that make the battle with Fibro all the more harder to cope with. ¬†Some are quite minor, some are very variable and others stick like best friends to Fibro.

After mentioning TMD in one of my posts, it was interesting to read others who also experience this. ¬†For me TMD was one of the first symptoms I had. ¬†I didn’t have any muscle, pain or discomfort at the time and I was also running a lot. ¬†I know when I was running I was clenching my jaw quite a lot, so it came as no surprise. ¬†It also didn’t faze me that much because at the time that was all I had to deal with. ¬†I got one of the spongy teeth guards when it turned out I had cracked one of my molars. ¬†That was ok.

But it wasn’t, because then other ‘things’ started to occur. ¬†The next was swelling, pain and numbness in my left hand and arm. ¬†Then neck pain, shoulder pain. ¬†Dry mouth, eyes and skin problems occurred I was then diagnosed with Sjogren’s Syndrome, but not until I’d been to the dental hospital, eye clinic and lastly dermatology.

In the middle of all this Fibro/Chronic Pain was mentioned and due to sleep problems I experience Chronic Fatigue.

Lastly, I have one condition that is not associated with Fibro but for some reason is assumed to be connected and that is Lymphoedema. ¬† Classically with this condition you are not meant to experience pain and yet in my left hand/arm/shoulder where the swelling is I have pain. ¬†The clinic separated this and said that they couldn’t be connected. ¬†So I am no further forward in understanding where this has come from, why it’s around and what I can do about it. ¬†I initially tried some lymphoedema sleeves and although they brought down the swelling I couldn’t continue to wear them because of the pain.

At the moment with the heat, I go to bed with a cool pack from the freezer which I lie my left arm on, as the hotter it gets the more uncomfortable it feels. I paid ¬£40 to have my rings resized, but at least I can now where them again. ¬†I’d been wearing them on my necklace for a while.

So, Fibro, I know you don’t like to be on your own, but I do wish you’d sometimes leave me alone! ¬† Wishful thinking.

Night x

#Fibromyalgia Captured Pictures

It’s been a busy time since I last posted. ¬†I’ve a lot going on at work and as I’m going away to the Highlands to switch off for a fortnight, it’s even busier finishing everything I need to do before I go away. ¬† I always panic that I’ve forgotten something to do. ¬†Those with Fibro will understand that memory is a real problem and I have continual lists on the go, memory prompts, and notes all over the place. ¬†But what I really wanted to do with this post is display in pictures what my Fibro life is like. ¬† So here it is.

Fibro Baggage (#fibromyalgia)

I was going to post last night, but the mother of all headaches arrived at 4pm. I left work after 6 and just wanted to switch my head off. It then got me thinking about all the other junk that comes with fibromyalgia. It got me thinking about all the various specialists I’ve seen. Then it made me realise how so disjointed they all are, I don’t feel they do this on purpose, I just know that they don’t fully understand that fibromyalgia is more than what it’s described as.

I attended the chronic pain service and they focused on pain.
I attended the dental clinic and they focused on my dry mouth and TMD.
I attended dermatology and they focused on my prurigo, dry skin and adult acne.
I attended the optician and they focused on my dry eyes and blurred vision.
I attended neurology and they focused on my neuropathic pain.
I attended the lymphodema clinic and they focused on the swelling in my left arm and hand.
I attended orthopaedics and they focused on my bone scan which showed ostopenia.
I’ve attended various other complementary places and continue to see my GP for my prescriptions. I also found out by pure luck that I was severely lacking in Vitamin D.

Despite all this, which kinda looks a bit desperate, not one of them communicated with each other, not one of them asked about the other people I’d seen. They made no references or even considered linking them together. When it came to treatment they were all considered individually. This meant that when it came to suggesting management ideas there wasn’t a hope in hell they were going to work the same way as just treating one symptom or condition.

This was the point where I knew there were no services that could support and help me. I’ve not bothered seeing anyone other than my GP for a while now. My symptoms bother me a great deal, artificially supported by medication, pain patches, ice packs and Mindfulness. I accept that that is the way it is, but it doesn’t mean I accept it should be this way. The one biggest problem in medical care today is communication and yet we have pretty much instant communication technologies.

There are no answers to fibromyalgia, I know that, but it’s very odd to try and help someone with this condition if you deal with all the symptoms separately and it makes me feel a time waster.

No wonder this condition is so isolating.

I used to look forward to Friday’s. (#fibromyalgia)

I used to look forward to Friday’s. ¬†I loved reflecting on my working week. ¬†What went well, what didn’t, what new things I learnt, what new connections I’d made, people I’d met, things I could take forward, new and inspiring ideas….you get my meaning.

My Friday’s now consist of what could I have done better, why my battle to do everything 110% takes so much energy out of me I could sleep for a year. Why my perfectionism is tested to its limits because I am naturally a very methodical, hard-working, challenge absorbing type of person. ¬†I love what I do and I HATE that I can’t do what I love with ease anymore. I then look towards the weekend hoping I can gain enough recovery to make the next week better than the last. ¬†It never works.

I remember when I attended the Chronic Pain Services last year and I already knew about ‘pacing’. ¬†I didn’t believe in it and I still don’t now. ¬†It’s fine if you’re not working full-time, but it does not work with full-time employment. ¬†End of story. Feel free to challenge that, but I would only really listen to those in full-time work who have been able to pace themselves.

Friday for me is not Friday, it’s the same as any other day, so does that mean I don’t look forward to any day? ¬†I guess not.

By MentalHealthProfessional_CombatingFibromyalgia Posted in Fibro

TMJ/TMD & Sleep (#fibromyalgia)

 

I actually did have a better sleep last night, with ear plugs that stayed in and several wakes up with pain instead of many.  Some people say that with Fibromyalgia their pain is reduced during the night.  I find it makes little difference and can have very painful nights.

I bought a mattress topper a while ago, which has helped and a sleep body pillow. ¬†I’ve been through about 5 different head pillows and go from chucking it on the floor to using it for a a few hours before chucking it back on the floor again!.

And….then there’s the issue of TMD/TMJ, something I know many will identify with. ¬†This started for me during my running year in 2007, just before any other problem started. ¬† At first I had no idea why I was waking up with a sore jaw and headaches. ¬†A regular visit to the dentist revealed it when he pressed on the upper muscles in my mouth. ¬†Ahhhhh.

At first I got by with a spongy rubbery tooth-guard after cracking a molar and I persevered with this for about 2 years. ¬†Then a visit to my Osteopath revealed a new type of product called an NTI Splint. ¬†After finding a dentist¬†that specialised in these, ¬†I decided to go ahead with it. ¬†It wasn’t cheap, so I paid it up over a few months and this is what it looks like.

It’s supposed to last about a year, but 6 months in and I’d already calved a significant groove in it. ¬†So I went back for some modifications. ¬†The reduction in jaw pain is incredible, and the headaches I do get I know are not related to TMD. ¬†It’s now becoming apparent I need a replacement, but it’ll have to wait until I get some extra cash together. ¬†This is going to have to be a regular expense for me, but a very worthwhile one. ¬†I just hope as it becomes a norm for TMD the price comes down.

I just wanted to thank those who have started to engage with me on wordpress. ¬†It’s something I had been considering doing for a while, but I do so much other stuff online I wondered if I would ever find the time…. and then I found I could post from a variety of devices. ¬†So that’s made things a little easier when I can’t be bothered to put my laptop on.