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Fibromyalgia :(

(10 Posts)
womanwholivedinashoe Mon 01-Jul-13 18:17:39

Hi all,
I was diagnosed last month with Fibromyalgia after suffering for 8 months with constant pain and neck and back spasms ( I know people have suffered for much longer) and I also know I'm one of the lucky one for having a diagnosis so soon as I'm a nurse (which after having the past six months off I finally had to call it quits which has absolutely killed me sad ). The pain started as shoulder pain, then my hip kept shunting out as I walked (my patients used to tell me to get into their beds bless them, it was a female ward smile ) and by early December I couldn't move for the pain. Saw a RHeumatologist in January and after different meds (have tried Amitriptline but felt like a walking Zombie) numerous pain meds I about to start on citalopram and nortriptyline, will let you know the results in a few weeks. But ............... the main reason for being on here it to hopefully find people in the same boat as me, my friends are really lovely but it's hard to explain and I think they are getting annoyed about me cancelled even a coffee date with them but I can't tell what i'll be like until that day sad.
I will be started Hydro at the end of July and see the pain clinic mid july but how does anyone cope with this condition, i've had to send some much info over to my parents as I feel like I look so normal so people don't take me serious and yet how could they not when half the time I walk around like an eighty year old lady :O.
Any help on what I should be doing, where I can go to meet likeminded people i'd be most grateful, just really what to vent at this illness that has taken over my life. I'm 43 have 5 children, 3 live at home youngest 2, but I can't even lift him anyone like me with any suggestions how to make this life better???? oh do have a great hubby who is super supportative but even he has his limits Pls xx

Hi

I have psoriatic arthritis, hypothyroidism and suspected fibromyalgia

It sucks but you have to just go with it

Rest when you feel you need to. This may be all of the time u til you get a good drug regime and I know that's not ideal but believe me, fighting against it will only make it worse.

I too have lost my job on medical grounds and am so upset about that because I loved my job so much.

You a re going to have todo things differently , break tasks up into smaller tasks, spread stuf out, rest as and when, accept all help and delegate

Google the spoons theory

womanwholivedinashoe Mon 01-Jul-13 18:58:59

Hi Kormachameleon,
Thanks for getting back to me, I have been a boffin on the internet since being off work and have searched everything I can find so have read the spoons theory and always use it when I try to explain whats wrong with me to others.
I think for me as i'm still in my first year you're right I am constantly trying to fight it and when I feel good I do too much and end up in bed for days sad.
Will try and pace myself more and when I have the energy to do little things rather than a lot.Thanks for the advice smile

It takes a while to get used to
I'm fairly new to it m&s it's a massive shock

Like you I look so well that people always comment that I don't look ill. So then I worry that people think I'm lying or exaggerating

I'm just 30 and having to use a walking stick and only go out a few times a week for a very short time - but I hope I will have it under better control soon and start to feel better and I'm sure the same will be true for tou

daisychicken Mon 01-Jul-13 19:18:53

Hi, I have Fibro - been diagnosed for approx 2 years now. I'm sorry to hear you've been diagnosed - its horrible sad.

Best thing I've learned is to pace myself - I'm not perfect at it and still do too much with the kids but I'm better than I was. Everytime i do something, I then have a sit down i.e get up, sit down with cuppa; shower, sit down once dry (disguised as drying hair); walk to school, sit down with a cuppa etc..

Work out what in the house you can delegate - my kids have to help though we disguise it as chores rather than 'having to help mum' so my oldest is 11, he sorts the recycling and puts the bins out, my youngest is 8 so he feeds the dog. They can both Hoover, put washing in, clean the bathroom etc so I do ask if I need help - sometimes I pay pocket money,sometimes it "I have 3 jobs to be done, we'll each do one then we can do x".

Picking up your youngest is hard. I had severe SPD when ds1 was 2, we swopped to cuddles when sitting down etc I didn't pick him up because I couldn't so we learned different ways to do stuff.

Let stuff go if you can. Explain the spoon theory to your older kids and ask them to help - just keeping their own stuff tidy & clearing up messes they make is a big help.

AngelRain Tue 02-Jul-13 18:03:31

Fibromyalgia is not a diagnosis, it is a symptom and I hope there is work going on to identify the cause of this symptom and any others you may be experiencing, otherwise you will just find yourself in a cycle of anti-depressant and analgesic drugs, a lot of which work against each other, and as far as the NHS is concerned you will be on the scrapheap.

I have friends with this diagnosis and without exception they all have low iron levels and low vitamin D levels. Some also have low vitamin B12 levels, without having pernicious anaemia, and many also have thyroid levels consistent with hypothyroidism but not high enough for the NHS to treat, and adrenal issues as well. Fixing these will make a remarkable difference to the way you feel.

I hope you are having all these tested and that referrals and further advice are being offered where necessary. A holistic approach is essential to getting well again.

I myself was diagnosed with CFS/FMS four years ago at which time I was very unwell indeed and in a great deal of pain. I am now pretty much recovered. It can be done.

Hi there
Things I have found helped - B12 injections (my GP was willing to treat me with these even though my test were on the low end of normal)
Taking a supplement called feroglobin plus. It is an iron tonic but has other vits and minerals in as well as things like beetroot extract (apparently Bradley Wiggins eats lots of beetroot to help increase oxygen to muscle cells)
Taking a very small amount of melatonin ( 1/4 of a 3 mg tablet) at night to help with sleep.
On nights when I don't have to drive I take 1/4 of a 10mg tablet of amyltriptaline instead. I tried taking it every night and it really helped the fibro but gave me problems with spatial awareness so don't like to take it when driving.
Going to bed early - religiously as many night as as possible. I aim to start getting ready for bed at 9.30pm when I can.

newestbridearound Fri 05-Jul-13 12:06:54

Hello, I have fibro and CFS; I was diagnosed 3 years ago but been suffering now for about 4 years. I find that I have good and bad patches, at the moment I'm in a very bad patch but I had a 2 year very good patch so you will probably find that there are times you feel much better than others. Like Angel said some people do improve dramatically so try to hold onto that.

I'm sorry you have had to give up working, I had a job I adored too and I was heartbroken when I had to leave due to my symptoms. It did help me improve though as I could concentrate purely on resting and looking after myself. You may find that you end up discovering new hobbies that you never had before because of this illness- I have many friends who have turned to things like crafts and baking to help them cope with the boredom and monotony.

With regards to coping I think the answer is you just find a way! At the moment I'm really struggling but somehow the days pass and eventually things will feel a little better again. Having a good support network is important, people to talk to and help you when you find things difficult. There are lots of support groups on places like facebook which are great for information and advice. Trying not to do much, pacing activities and delegating jobs where possible will all help you to keep your pain and energy at more manageable levels. I hope that your new pain meds can help; I'm on citalopram for depression and it really helps me with that, hasn't done anything for the pain though. I think it's a case of experimenting to find what works for you.

Have you come across the spoon theory? That is a great analogy to send to people who struggle to understand what this illness is like. It will take time for your friends and family to come to terms with it- because we generally look 'well' it is hard for them to comprehend how unbelievably shit we feel!! Try not to stress about it as stress makes fibro a lot worse.

In my experience the only way to improve with these sort of illnesses is to give into them (not a natural impulse at all since we are conditioned to think that we have to persevere and fight against illness). But the more you work with it, rest and listen to your body the quicker things will become easier.

womanwholivedinashoe Mon 05-Aug-13 17:53:44

Thank you so much for your advice, sorry its taken me so long to get back to you. I start on a pain management course tomorrow for 8 weeks which (apparently) will not take the pain away but will help you to have the skills to cope with the pain and continue as best you can, they will be talking about pacing as most of you have mentioned and exercise techniques. I also started hydrotherapy last week and although really hard I was with a really nice group of women (all with different ailments) and it finally felt like I was doing something rather than hiding away which a lot of the time I do, do now sad.
I'm so surprised that so many of us have this and yet not many people know about Fibromyalgia (FM).
i have read the spoon theory and found it an excellent way to describe how I am but i've only told it to my parents and my husband who is constantly saying how many spoons do you have left grin.
My kids are helping lots but hard to explain to a 2 year old who is the most active of all my kids put together and wants to live in the park.
I will also ask about the B12 injections as I need to see my GP as although on all these meds no one is monitoring me on a regular basis but I try not to stress................................
assuming my yoga pose lol.
Thanks ladies, wishing you all well xxx

Matildathecat Mon 05-Aug-13 18:34:42

Hi Womanwholivedinashoe,

Sorry to hear of your problems. I don't have fibromyalgia but a lot of similarities. I was a midwife, loved my job and the suffered a disc prolapse. Two ops and any amount of physio, hydro, acupuncture, spinal injections and anything else you might care to mention, I, too have lost my job, most of my previous hobbies and essentially my old life. It sucks. I have been told that pain management is now my only option. My drug regime is pretty horrific.

Like you I do hydro, and swim. I do one to one Pilates with a physio/ Pilates instructor which is fab. I am also due to start a pain management group. My friends and family have been truly heroic in supporting me.

Now I will finally get to the point!! Did you know that if you cannot work due to ill health and your NI contributions are up to date then you can claim ESA? It's £71 a week and payable for a year. I nearly didn't find out about this. I wrongly assumed that I wouldn't be eligible for any benefit as my husband earns well.

Are you planning to apply for ill health retirement if you were with NHS pension scheme? I am about to though am dreading the process. ( have a blue badge for parking, can't really see how I could work in midwifery, especially as I can't sit in a chair...)

Anyhow, wanted to say hi and even though we have a different diagnosis, maybe we can compare notes?

Wishing you well.xx

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