A Dilemma

I received a wedding invitation recently, which should be good news but as usual it brought with it the same dilemma. Not what will I wear, or what gift should I buy, no it was how do I reply. As I don't know whether I will feel well enough to go, so is it best just to say no, that way you don't let them down at the last minute. But then is that fair to the family who are also invited, as on the day you could actually feel well enough to go and you've all ready declined.

I hate this feeling and hate having Fibromyalgia even more, because of how it takes over your life. You have to live one day at a time, so how can you plan something next week, next month or even next year................

Helpful things

I was really tired this morning, and despite sleeping late still didn't feel like I'd had enough sleep. The amitriptyline is suppose to help me sleep, but as I've been taking it for ages perhaps I need to increase the dose. It is very good for nerve pain, as I once tried to stop taking them and could really tell a difference.

I think I felt so drained as we'd been out the last two days, which even for short outings is still a lot. I have noticed my eyes have been more blurred recently, so it makes reading difficult especially small print.

I had to sit down to empty the washer earlier and also get a pizza out of the oven, as its much easier on my back doing it that way. I normally sit on a chair to put the plates away too, except the large ones which I usually ask someone else to do as they are too heavy. If no one else is home I have to put them away one at a time.

I did get a perching stool on loan from the occupational therapy department of our local hospital, but its really too big for our kitchen.  The OT also gave me a thumb splint to wear when ironing, as it gives me cramp in my hand. I do have full hand splints for my carpal tunnel, but you can't do anything wearing those.

Somethings are really useful, I couldn't be without my drinks bottle at night, as it has a no spill lid. Ideal for when I can't sit up, or if I knock it over when my hands are numb.

Better day

I was so pleased to feel a lot better this morning,  I even went to a sale with my husband and daughter where I got a new handbag. The pain was still in my leg though, so was glad we didn't stop long.

I felt well enough to go to my sisters house this afternoon, as it was my brother-in-laws birthday. I had a nice time, but can tell my memory isn't what it was at times, especially when playing trivial pursuit.

Most of my pain has been in my spine and legs, so more pain gel to help ease it as well as the tablets. My hands also feel sore as though the skin is burning, so will use my cooling gels packs to soothe them before bed. (That's if I remembered to put it back in the fridge! LOL)

One worrying sign today was I felt like I've a cold coming on, and if its the type of virus that causes a flare up it won't be good news!

Struggling

I really hoped to feel well enough to go out this morning, but certainly didn't feel that way when I woke up. But to avoid disappointing anyone, or giving in I got up, as I did want to see our Tom's new department at work, now he has been promoted to supervisor. I had felt very numb and stiff when I woke up, but walking around and having some breakfast helped.

When I got there I really wished I had stayed home, its no pleasure looking round when your legs & back muscles hurt. The pain is more bearable when moving, but I can't stand for long so don't like busy shops. with long lines at the checkout.  Luckily Paul or Laura stood and waited , while I found a seat outside, but it makes you feel a bit useless.

I was hungry at lunchtime, so enjoyed our burger, even though they aren't something I eat very often. When we got home I did some ironing, as our Laura needed some uniforms as she is working tomorrow and Monday.

I had to sit down though once I done a few items, but usually I prefer to iron in a morning when my legs don't hurt as much.

Tomorrow we have been invited to my sisters, to play board games and have some birthday cake. I really hope we can go and have some fun for a while, at least it doesn't involve walking or standing! LOL

Friday 27th May

When I woke up this morning I had a funny thought and it make me remember Forest Gump's saying Life is like a box of Chocolates! I had though it would be good if you could chose which pain or symptom you were going to have that day. So if you were going to be walking, the pain could be in your arm instead, or if you needed to concentrate, then it could be in your body and leave your head clear. Or even better, put all the pain in a box and not open it!

Today both ankles decided to flare up, as if getting around with one wasn't hard enough. I am hoping to go shopping for an hour in the morning, so hopefully it will have moved some where else when I get up. I know some sufferers use a wheelchair rather than stay home, but not sure how I feel about the idea as I would be worried people would think there is nothing wrong with me. That's the biggest problem with invisible illnesses, you look fine most of the time, so people don't know how much pain you are in.

The back of my neck as been painful too, so can't turn my head much and as usual when its there it gave me a splitting headache. Paul put some of the pain relieveing gel on my neck, which easied it for a little while. It's still hard to believe how many parts of the body are affected, but we do have a lot of muscles, tendons and ligaments.

Decisions

Suffering from Fibromyalgia means you have good days, when the pain is bearable and bad days when the pain takes over. But most days are in the middle, not that you know which sort of day you will have. Sometimes it's not the pain that makes it hard to cope, its worrying you will forget something important. I can't make a decision like before either, so if I didn't have a family to rely on I don't know how I'd manage.

One important thing I struggle with is medication, have I taken some, or not! Remembering to order a new prescription is something I have to carefully monitor, so I don't run out of tablets.

It gets very frustrating as I had a really good memory, before my diagnosis I even went to see my GP to tell her how worried I was. She offered me a memory test that they use for alzheimer patients, but told me if was so easy I wouldn't have a problem passing it! So I decided not to take the test, then when I read about the cognitive problems sufferers have, it was a big relief.

Now I have to find ways to deal with the problems...........

A trip out

I had a trip to the local archives planned this morning, (the first of the year unbelievably), but woke up feeling like my head was still asleep. (Which isn't ideal for doing research)  I also felt as though my body had been pummelled all over and something heavy was sat on my chest, so it took all my energy to get out of bed.

I was so tempted to cancel, but decided to go as Tom said he would fetch me home if I didn't feel any better. Tom dropped me off and I did have some success, but didn't enjoy it as much as I usually do. I couldn't even remember how to spell the word record, when I signed in! I get a lot of pain in my neck and back, (one of the worst affect areas), so after sitting looking at the records it was a relief to come home.

I had a splitting headache when I got home, probably due to a combination of eye strain reading the old fashioned writing, and lack of fluids! ( I do miss my cup of tea when I'm out! LOL)

I had been a bit worried how my ankle would be today, but luckily it was fine. I wasn't hungry at lunchtime, but treated everyone to something from Cooplands.. I had a custard slice for my lunch, which although it isn't very healthy, it doesn't hurt occasionally to have a treat.

I still feel as though my head isn't working properly, I can't concentrate on anything and get the words muddled up when talking. Even writing this has taken longer than normal, as I had to reread it over and over, so it made sense!

Hoping tomorrow is a better day............

Vitamin D

Update about my ankle, as the evening went on it got steadily worse, until I could hardly move it. It felt as though the joint had locked up, was extremely stiff and the numbness was creeping up my leg, so I wonder if I had trapped a nerve. It is times like this when I wish we lived in a bungalow as getting up and down the stairs was a challenge to say the least!

I did eventually get to sleep, and it was much easier this morning until I put some weight on it. Thankfully it eased to a dull ache, so I could get some washing done, but I avoided walking up and downstairs more than necessary.

It has been really windy the last few days, so it's not felt warm enough to sit outside in the sun and get some Vitamin D. Although I take a daily supplement, (as the injection my doctor tried at first didn't help enough), I am suppose to get as much sun as possible. Which isn't easy as I'm not that keen on sunbathing, so I usually just sit out for a bit with a nice cup of tea.

Which reminds me I really need to go to see my GP to arrange another blood test, to check the levels, but getting an appointment isn't easy these days.

Distraction for the pain

Today the pain has won, mainly because it was in my ankle, making it painful to walk. I did manage to empty the dishwasher after breakfast but then without warning it felt as though my ankle locked up. The pain comes and goes, but all the time it feels as though its about to give way. Just glad I wasn't out, or it wouldn't have been fun getting back to the car!

Later the pain has moved to my ribs as well, so it feels like something is giving me a bear hug and slowly crushing them.

As a distraction to the pain I have scanned some photos, to add to a Family Tree that I'm researching. Because I am at home so much it gives me something to do, also helps me make new friends. I love to help other researchers which makes me feel useful, and on good days I love visiting the archives.

Limitations

I was relieved to wake up this morning without the awful headache, but the pain was pretty wide spread over my body, including twitching mucles. Don't mind those so much, at least they don't hurt unlike the burning skin sensation in my thighs. The electric shock pains are the worst, you never know where or when it will happen except that they hurt and I seem to be having a lot at the moment.

My arms have been so painful it felt like they were broken most of the afternoon, probably because I did some ironing this morning! It really prevents you doing even simple jobs, or at least without some help, like cooking a meal. As I struggle to peel vegetables, or lift heavy pans etc, so its lucky both Laura and Tom can cook. Also having memory problems I have to really concentrate on what I'm doing when cooking. As one day I put some sausages under the grill and went outside to look at something and totally forgot about them! (Luckily Tom came down in time to rescue them)

It affects other things too like hobbies, as I used to love doing really complicated jigsaws, especially photomosaic like Mickey below. But I noticed a few months ago that I would sit all evening without putting a piece together. It's as though your brain is full of cotton wool, plus blurred vision doesn't help with those lol, so I decided rather than give up doing any, to just do simpler pictures like the cute Tatty Ted.

UK Fibromyalgia Website Click Here

This website provides lots more information about the condition and has a very friendly forum where you can get help and support from other sufferers.

Bad Headache

Last night I could feel a headache coming on, but unlike a normal headache which I get a lot it was mainly around my left eye. I took some paracetamols and tramadol, as I find they work best taken together, as well as some ibruprofen. (It eased eventually to a bad headache, but wasn't able to use the laptop, and it felt much better once I went to bed in the dark. I don't get them this bad very often and it woke me up about half six this morning, so had to go and make a drink and get some more tablets.

Eventually after many more tablets it eased to bearable, and now just feels like there's a needle stuck in my eye.

I can't say I've done much today, I did manage to do one load of washing as my husband Paul changed our quilt cover which is too big and heavy for me. I did hang it out, but its not easy when your arms feel like lead weights, struggling with a wet king size cover!

Laura our daughter helped me cook tea, we had a new piece of chicken with a cheese and ham crust which I really enjoyed. Most days I eat food but don't enjoy it, but for once it was a pleasant change and will be perfect with some home grown vegetables like their marrow and courgettes.

I can't eat very rich food any more, especially fresh cream, or foods in a creamy sauce. But despite not eating anything like what I used to, I still don't lose much weight. Not been active and getting much exercise is my main problem, but even small walks aren't easy when you are in pain.

My face is numb at one side at the moment, which was one of my very first symptoms years ago. I was referred to see a neurologist with the numbness and tingling who arranged for me to have an MRI. But when the results ruled out MS, the doctor said she couldn't explain my symptoms so discharged me!
I did have a nerve conduction study done, which showed I had carpal tunnel in my wrists. But no one explained why my feet were extremely sensitive, or one side of my body was sensitive, but the other was numb.
It gets rather depressing when test after test comes back and the doctors don't have any answers.

Early start

I woke up knowing we had a possible buyer coming to view our caravan, so was feeling rather stressed. They were expected at 9am, which was a bit early for me, but I allowed plenty of time to wake up slowly and then got ready without rushing. I was too nervous for breakfast, but felt much better once they arrived and loved the caravan.

I had mixed feelings when they drove off, part of me was sad to see it go, but the other half knew I just don't feel well enough to use it enough. You need to be able to plan a trip away, you need to book a site etc, but that's not easy when you never know how you will feel when you wake up.

We had an amazing trip last year to New York, which for weeks before I was really worried how I would cope and not spoilt it for my family. The flight is about eight hours, which if you are in pain sat in the cramped space, makes it much worse. So whenever possible I went for a walk to the back of the plane, just to stretch my legs which helped. We also chose an airline with a decent seat pitch to give us plenty of leg room. (Well not exactly first class, but better than some previous planes we've flown on!)
 I knew I wouldn't be able to walk for miles every day, but with lots of planning, using the bus and trains I coped really well. The most important thing was having plenty of rests, so stopping for a drink or snack often through the day, helped pace ourselves. The weather also helped, as it was warm ( I've always used heat to help with the pain) but not humid, then the air conditioning in the hotel room stopped it getting too warm to sleep. I also worried the hard mattresses would hurt my back muscles, but using a spare quilt folded up to lay on really worked. ( I even left the maid a note to leave the bed alone!)

We saw so much more than I ever expected to, so didn't feel guilty for spoiling everyones holiday. I did have quite a bit of pain, mainly in my elbow, but one day it was in my foot which was frustrating, as I couldn't walk so we caught the bus back to our hotel where I rested it for a few hours. It also gave me time to catch up with our daughter Laura who had been working at summer camp out there. While my husband Paul and son Tom went to a aircraft museum to see Concorde, which they both enjoyed.

I was quite surprised you can't buy ibruprofen gel in America, but did find a substitute which helped ease my foot and elbow pain for a bit.

So after such a brilliant time it helped me believe that with lots of planning and a bit of luck you can have a good trip, despite having this awful condition. I know next time I might not be as lucky, as I've had a few bad flare ups which prevent me from leaving the house for weeks,  but I realise getting stressed doesn't help, and probably makes things worse.

Bad Day

As soon as I woke up this morning I knew it was going to be a painful day, the pain was all over my body.  I didn't have the energy to get up, so my husband got his own pack lunch and brought me a drink and my tablets. My muscles are all aching, especially in my back and neck.

I eventually got up and felt a bit better once I'd moved about for a bit, but it didn't last. I managed to put some washing in, only because it needed to go in rather than I felt well enough to do it. I did some more jobs like empty the dish washer, but my fingers are feeling numb so its hard not to drop things.

Lunchtime I didn't have any appetite, which is normal these days but had a ham sandwich. Instead of what I normally have, a slice of toast as I need to eat more healthily to lose weight.

I had to rest this afternoon, I didn't want to but my muscles were very painful, especially my lower back and hips. Luckily it helped enough so I could cook a simple tea and tidy the kitchen as we are expecting visitors tomorrow. My hands are still sore, they feel swollen so even typing is painful.

I am wondering if I feel this bad because its the beginning of a flare, which is usually caused by a virus.

Well off to bed now as I'm shattered, lets hope the next post is more positive!

Medication

I take a lot of medication, as there isn't one magic tablet for all my symptoms, but it doesn't help much.

For my Fibromyalgia I'm currently taking Paracetamol, Gabapentin, Amitriptyline daily and when necessary Ibuprofen and Tramadol for the pain. I also take Chlorphenamine for my skin sensitivity, and Adcal for Vitamin D deficiency.

Plus Atenolol for high blood pressure, and have various creams for my skin, and psoriasis which luckily is just on my scalp.

Symptoms

Where do you start????? well the main symptom is pain, which appears all over the body. The pain can be felt as a burning, stabbing, aching, even electric shocks pain all over the body. It moves around the body, sometimes the pain lasts minutes, hours or even days. Your skin can feel as though its badly sun burnt, and your muscles can feel so tense its hard to move.

Tiredness is another difficult symptom, waking up feeling as tired as when you went to sleep, is normal with this condition. The lesson that you eventually have to learn is to pace yourself, better to do a little every day, than push yourself one day and need several days to recover. This is easy to say, but not easy to accept, or do when you can see things need doing.

Numbness, tingling or pins and needles are common, making it hard to do things, especially when your fingers and hands are affected.

As it affects the muscles in your body, it has affected my eyes, often they go out of focus making it hard to read or watch TV. I stopped driving two years ago because I no longer felt safe, even though it comes and goes its not worth the risk.

I also have tinnitis, which is worse at night when its quiet, that can make it hard to get to sleep, on top of the pain.

Cramp is another symptom that causes more pain, especially when it keeps you awake.

Memory problems, this is both inconvenient and dangerous at times, especially when cooking. Sometimes you can't remember something so basic as a name, or how to spell a simple word.

Some other symptoms include been sensitive to odours, bright lights and especially noise, morning stiffness, muscle twitching, feeling that my fingers are swollen, sensitive skin, and dizziness.

Background

I was finally diagnosed with Fibromyalgia in February 2009, after suffering for many years. I had seen my doctors over the years, had various scans, blood tests etc but they never had any answers, or provided me with any relief from the symptoms. They ruled out MS, Lupus etc, and when I finally got a diagnosis, it was a relief in many ways.

Once I read the information leaflet explaining the symptoms, which I appreciate are many (and do vary from patient to patient) it made me wonder why it took so long for me to get a diagnosis. The relief of knowing what was wrong didn't last long, mainly due to the fact you can't just take a tablet and feel better, or that eventually you will get better and the pain will stop.

Living with a chronic pain condition isn't easy, so not surprising some days are better than others. Especially when most people have never heard of Fibromyalgia, and because you look normal, people don't understand how much pain you are in. It's not their fault, how can they know how you feel, which is why more awareness of the condition is needed. Not been able to plan activities, outings etc because you never know how you'll feel is very frustrating, causing more stress and guilt by letting your loved ones down.

So I have decided to write this blog to help me cope, and I hope it will also help other people who are also suffering, even just to let them know they aren't alone, or to help the families of sufferers understand a bit more about the condition.  Although I can't promise it will always make sense, but as people with Fibromyagia know it affects the brain and at times you have Fibro fog moments. I am not a medical expert, everyone suffers differently, so this is how the condition affects me and my life.