Some advice on coping with a flare please...

[helen66]

This is the first time I have posted a message on this forum so please bear with me while I outline my story. I have 3 health conditions (so far!). I was diagnosed with lymphoedema 30 years ago when I was 20 although I’m told I was born with it but it didn’t emerge until then. This means my legs are permanently swollen with fluid which causes me aches and pains every day. I’ve never been offered any treatment but have managed the condition very well. 18 months ago I was diagnosed with an under-active thyroid for which I take levothyroxine which alleviated the symptoms for 6 months or so but the fatigue and pain has slowly returned although my doctor won’t raise my dose as I am just “within range” on my blood tests. I was diagnosed with fibromyalgia in February this year by a rheumatologist. So basically I am in some degree of pain every day due to one of the illnesses. I have problems sleeping and the tiredness can be overwhelming at times. I’m not a moaner, never have been. I have a job, run a small business and try to remain positive. Over the years I’ve dealt with some challenging times including the sudden death of my father in 2006, my mother suffering with depression as a consequence until she had a stroke when I cared for her for a year until she died suddenly in 2011. That strength seems to have been severely tested lately and this week I think I had my first extreme ‘flare’ of fibromyalgia. On Tuesday a large part of our dining room ceiling decided to collapse without warning. I’d just walked through the room and the ton of plaster missed me by seconds. It shook me up a bit but I did my usual ‘let’s tidy this up and get on with it’ thing. Since then though I’ve experienced some intense pain at times in random parts of my body mainly my lower back and right knee (told you it was random!). This is much worse than I’ve had before and it makes me burst into tears without warning and I only sleep for an hour at a time at night before I wake up in a right mess. I’m still working as normal as I love my job but for the first time in my life people have asked me if I’m alright so I’m obviously not masking things well. How do you all cope with these awful flares? I hate feeling like this. My lovely family keeping telling me to go to the doctors as they are starting to worry but I know this is a waste of time. I can cope with the day to day aches, pains and tiredness but this is on another level. Do I just try to “push through” it until it goes away which is what I’m trying to do or will this prolong it? I’d really appreciate some advice from you lovely people...no one else understands and you start to feel alone.

[Regnofibro1]

I would go to doctor. When dealing with fibro when you try to push through it. It will usually make it worse or prolong it. Resting, warm baths, gentle stretches or tens unit. Most of us are on some kind of meds for it. Sleep is very important in dealing with fibro. My advice is see a doctor first. Try resting when you can. Try a warm bath before bed. A hot water bottle or warming pad may also help you sleep. Listening to your own body is the key though.

[helen66 in reply to Regnofibro1]

Thank you so much for your advice. I try to wind down before bed with a warm bath, not have any caffeine and all the other things the rheumatologist suggested but it's the pain and discomfort that wakes me up most times so it's a bit of a vicious circle isn't it? Pain = no sleep = more pain! He told me that paracetomal might help but ibuprofen wouldn't but didn't offer anything else. You're right of course. I have to stop being so stoic about this and go back to my doctor although he has very little empathy! I really appreciate your reply.

[TheAuthor]

I have read your post with so much pain and sorrow for what you have endured and continue to endure now! I am delighted that you have been able to express yourself so well in your post and my genuine opinion is that you should tell your doctor exactly what you have told us, as they may be able to help you with the way that you are feeling?

Fibro flares can be brought on by so many things, and maybe, (just maybe) you have bottled so much up inside of yourself that your body is telling you that it is your turn to reach out and ask for help? So please do! Please take care of yourself. I want to genuinely and sincerely wish you all the best of luck.

All my hopes and dreams for you

Ken

[helen66 in reply to TheAuthor]

What a kind person you are Ken! You are so right when you say I bottle up too much. I think my bottle is now fit to burst! The problem with me is I don't like to worry anyone close to me so I pretend I'm OK and even convince myself I am to appear normal to everyone else. Yes, you are right of course Ken. I need to talk to my doctor again no matter how unsympathetic he is! Thank you so much for your kind words - it has really helped me this morning. Helen

[fenbadger]

Good morning Helen

I'll remind you of the sentence to the right. We cannot replace the advice of a medical professional. That said, what is your coping mechanism? You seem to be a pusher. I think there comes a time when you must give in and rest. I sympathise with the idea of " I may as well be in pain getting on as sitting around". But sometimes a tactical withdrawal to recoup resources can help.

You've had a lot to put up with too. You haven't said if you use painkillers or other medication, and I feel I rattle needlessly at times.

I agree too that there are times when you have to get on as the plaster wont pick itself up. I think of all those mums with small kids, no matter how grotty you feel, they must get to school, the shopping, washing and meals must be done. It's not easy.

However, there's no shame in taking it easy for a bit, and if folk have started to notice, your body may be giving you a warning. Hope this helps. Hugs x

[helen66 in reply to fenbadger]

Thanks so much for replying. As I said to the kind people above, I tend to pretend I'm OK in a vain attempt to convince my loved ones I am. Also, I think if I keep pushing through I can distract myself from the tiredness and pain. Sometimes it works but it has started making me worse lately which isn't a good thing. The annoying thing is I should be at a good place in my life now. My two daughters have graduated from uni and have good jobs and happy lives with their boyfriends and me and my lovely husband should be enjoying life but these health issues are just overshadowing it all. I take the odd paracetomal but that's all I've been offered. I just need to bite the bullet and go see my doctor even though he has no empathy at all! All you lovely people have helped me a lot this morning. Finally, people who understand how I feel - I will definitely be coming back! Helen

[fenbadger in reply to helen66]

good. they're a nice bunch on here.

The best laid plans of mice and men etc.

So should I be enjoying myself but circumstances, not just health, have been against me of late. I'm cutting down on activities but still doing as much as I can - and making memories for the future when I'm pretty certain I'll be lots les mobile.

[Furry]

Hi, great advice from the others, I would see the dr and tell them exactly how you feel. If your GP is not good then I would change to another. It helps so much to have an understanding GP and they can refer you to pain management and physio etc. You have had a such a lot going on in your life, take some time to look after you and rest. Take care X

[helen66 in reply to Furry]

Another lovely reply - thank you so much! Yes, I may think about changing doctors but the problem is you don't know whether you're going from the frying pan into the fire! And yes I need to slow down a bit and stop being so stubborn... Thanks so much xx

[Angelseven]

Hi Helen

You have been given good advice. My story is similar to yours in that I have had quite a few life events that should have knocked me down permanently but being a fighter and pretty strong willed I kept going.

However it did come to a time when my body told me to stop in the most dramatic fashion and that was the wake up call for me. Like you my two girls are in happy relationships and have good lives and jobs. I am on my own and retired now and able to more or less suit myself so if I am having a bad time of it I rest and try to pace myself.

I agree though you should go to see your GP to see if there is anything that will help.

I wish you all the best -let us know how you get on.

Kind regards

Jane

[helen66 in reply to Angelseven]

Hi Jane, I think it's a common problem with women that we spend our whole lives taking care of everyone else and forget to look after ourselves. I don't even tell my family how grotty I feel because I don't want to worry them. It's just how we're programmed I guess. I'm beginning to realise how counter-productive this is really as if we wear ourselves into the ground we could become seriously ill and totally reliant on them which would be my worse nightmare.

All you lovely people have been such a help this morning. I really need to take better care of myself. Seeing my doctor again might be my first step although he's got a really poor attitude towards fibro. Last time I saw him he said he could give me details of a local support group but in his opinion all they do at their meetings is sit and complain about their doctors - how unsympathetic is he?

Thanks so much for your reply - I will definitely be back!

Helen

[holly20]

Hi there welcome to the site i have not been on here long myself, i am sorry to hear all the troubles you are having,but i have found out not to push yourself as you will only make the pain and flare ups worse,i no its hard,but we try and carry on.lots of Hugs,Holly20.xx

[helen66 in reply to holly20]

Thanks Holly! The people on here are so welcoming and lovely. Good advice - I know deep down that there are times I should take some time out but I'm so stubborn and hate to let this horrible condition win! I will take better care of myself though. I really appreciate your kind words, Helen xxx