Hello,
My friend has suffered with fibromyalgia for years. She’s recently had her thyroid removed and the pain is now worse than ever. She is struggling with living day to day.
Does anyone have an tips on a daily routine to cope with the pain?
Also I was wondering if there is anything you wish your friends/partners would do to help you…or maybe there’s something they do that you wish they didn’t?
Thankyou
Hello, it’s horrible to watch friends and loved ones in pain, has the doctor looked at her meds too see if they can be adjusted? I do hope pain settles after her op. My advice for anyone is to ease into each day without too much pressure from making too many arrangements or plans as our fibro bodies can change day too day ,there’s always days we feel we can do more and then days where we need to slow ourselves down. It’s making adjustments or adapting to work with this condition, I do hope things gradually improve for her xx
Hi, charlielove, gentle hugs to you and your friend.There is nothing worse than knowing a friend is in pain, if you could take the pain for them you would. I find that first thing in the morning is my most painful time, I have to get out of bed in stages. My feet are quite dry and painful so I usually rub in some moisturiser which helps both my hands and feet. Then I have a wonderful partner who brings me a cup of coffee and helps me dress, he also rubs my shoulders and neck to ease out the knots that have appeared overnight. Some mornings this bit is skipped as I can't stand to be touched it is too painful. I have to sit on the edge of the bed for a while before I am ready to stand, then I have to stand and make. sure my balance is good before I dare move. I have to take my medication and then eat. I have to plan my day around how I feel from hour to hour because I can change so quickly on how well I feel I can cope with things. I know I frustrate people when I suddenly have to leave and go home, they find it really hard to understand that I just need to leave to go and lie down it's as if my switch has been pressed to off.
I don’t know what she has tried. But I had to keep going back to the doctors several times to increase medication. First I was on co-coronal, tramadol, then butec patches the oromorph.
Basically the patches are like morphine but u change them every week so if she suffered with memory and forgetting to take stuff this is ideal. U can have different patches from 5/10/15/20 mgper hour. It’s a does released every hour. But I recommend speaking to the doctor about these my pain at moment has got that bad I take 15mg of patches and liquid morphine on top. But this is worse case enario and not until they have tried lower doses first. Also I recommend not being kn the long period and I flick between 5-10 and lower or increase my dose depending on what sort of week I’m having.
Stuff like amitriptyline/ nortriptyline help prevent migraines and help with pain.
Deluxotine helps with mood and nervous system
Sertraline helps just with mood and depression.
Tramadol helps with pain but can cause more headaches which is what I found l was on 4-8 tablets a day.
Basically you have to play around with medication to suit the needs of the individual.
Always research the drugs before because there’s some drugs I wouldn’t take because there is mixed reviews. I was on deluxotine for a while but I’m better off it.
I always have steroid injections into my back and maybe worth getting referred to a pains clinic which you go can do once they have tried everything else. It took me a few years to get referred. I now have steroid injections into my back they said because I’m working and trying to still live my life they would give them to me. But it’s not something they offer patients. But they have really helped me. My over life is better when having them.
- daily routine is going to bed same time every night, not over doing it with activities pacing yourself. Telling your friend we will do this instead because if she’s anything like me I’m stubborn and will try and do what I can to please others some people don’t notice your in pain. Just suggesting things that are low impact if she says I’m okay today I can do this then go with that. But just be mindful what you do you can do with ease but to ur friend it will feel like running a marathon. Simple things like waking for a few minutes or going for a meal can wake someone out with fibromyalgia. You have to judge it based on what sort of day she is having best way to do it is ask her what do you want to do today.
When it comes to a partner or friend I don’t want to keep nagging someone to do it. So I’ll either do it myself or my partner knows what to do. It’s simple things like carrying the shopping because it hurts to carry stuff/ opening heavy doors/ if your living with the person heavy loads of washing carrying that down the stairs. Washing up heavy plates all these can hurt on a bad day. Anything you can think would be heavy just offer to help with. If you ask do you want me to do that the person will say she can cope or yes please I would like the help. The main thing is keeping that persons independence because as far as I’m concerned I want to be as independent as I can and have help when I need it. So it’s a balance.
It’s hard to cope with as the person going through it but also the person watching you go through it so both isn’t easy but just be patient with each other and you will be fine every day and week will be different and you will have to go with the flow a lot of the time but the good days are worth it.
The best thing I could do with is help with the physical activities when I get too tired. Things like cooking, putting the bins out, picking kids up, tidying up etc just so I can have a little sit down before I have to summon the energy to do the next thing.
The most important thing my husband does for me is to understand that at the end of the day the last thing I have the energy for is to prepare and cook food.
He cheerfully does most of the cooking, and on good days I will surprise him by doing the whole meal, or on middling days I will prepare the veg and he will do everything else.
I feel guilty sometimes, but as I usually end up with the kitchen clean up the next day, not so much.
Also, for years he was the morning cuppa-maker. These days I don't sleep well and am usually up before him, so I am trying to catch up with my share of tea-making. It will take a long time though.
Hi I also have had fibro for years, and also had a thyroidectomy a few years ago, it definitely got worse after. They should be giving her regular blood tests to check her levels since having it removed as being hypo can also cause aching and pain. Maybe her levothyroxine dose may need increasing.( I’m assuming that’s the med she’s on that’s what I now have to take for life, sorry if it’s not)
Hi - there's a lot more than pain to cope with (most often fatigue, fog, sleep, gut). But in my experience pain can be divided into a) local pains, which we can work on with expert help or many kinds of exercises etc. in regular short stints. Here a friend might help encourage this. And b) the overall Ache caused by overdoing it. Here friends & partners can help best, by watching out for the sweet spots and the limits, warning etc. My wife can see the pain in my face long before it hits in, because my cortisol is overriding it. So when she says "you need to go home", I know I do, altho I occasionally still override it. Sometimes she catastrophizes, which I have to then work against, from my accepting-but-motivated mode. But I prefer it that way round.
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