How can I help

[Flowerpower14]

My mum was diagnosed with fibromyalgia in the last year. I no longer live at home, but was wondering if anyone has any ideas for me to help out. She is currently only on paracetamol for pain as she is trying to manage without pain relief for as long as possible. I don't quite know what I can do to help though, I listen when she's feeling down but not sure what to do beyond that

[dorrie35]

Just trial n error really ,heat packs ,electric overblanket,I also use Vicks rub for heat I feel this helps me ,I also can only take paracetamol n tramadol for to help with sleep

[FRreedman]

I would tell her she should take whatever analgesia she wants to reduce or even kill the pain. Pain is a symptom of something being wrong (rather like a burglar alarm), once it has given you that information, it is redundant and should be removed from the scene (or turned off). How about arranging for her weekly shopping to be home delivered, but leaving her fresh veg for her to get out and about for, by going to the local shops and not becoming a recluse, or housebound by default. Phone her regularly and often, maybe twice a day, to check how she is and what she's doing. Make sure she sees her doctor regularly.

[Flowerpower14 in reply to FRreedman]

Trouble is she's very headstrong, and doesn't want everything doing for her. She's still managing to work, although she's very tired by it, but she says she doesn't want to give up on these things. I ring her often anyway, I just wish I could do something to ease things a bit

[Dinkie]

Just listen to her and never assume that because she was able to do something today she can do it tomorrow. Fibro is different for all of us and what works for one may not work for another. Gentle exercise, even a stroll down the garden helps. Buy her some epsom salts (they do lovely scented ones too) as a soak in them often helps with muscle pain. Cook something for her freezer so that on the not so good days she just has to reheat and eat. I can't take prescription meds so rely on things like epsom salt baths, biofreeze, tens machine, hot water bottles, wheatbags - the microwaveable ones. Some find relief with hydrotherapy, tai chi, personally I use hypnotherapy and chiropractor to ease pain. I manage to work too but have had a occupational health assessment and various reasonable adjustments were put into place to enable me to continue doing my job. Your Mum is a lucky lady to have such a thoughtful daughter.

[Flowerpower14]

I'll definitely try the salts and some other options you've suggested. The other thing she mentions is her memory, I know this is worrying her a lot at the moment, she forgets things easily which I know is part of it. Is there anything that may help with this, or can at least reassure her that she's not going mad, which is what she thinks?

[Dinkie in reply to Flowerpower14]

ah the dreaded fibro fog. Very common I'm afraid. I just make a joke of it. I lose words all the time and sometimes what comes out of my mouth isn't what my brain is thinking. I told the girls at work I was going to a wedding when in fact I meant lunch. They join in with the humour and commented that they didn't think much of my outfit. I once turned into a driveway and looked at the house thinking - who has painted my house pink - wrong house, wrong road. I live one road along 🤣😂 My brain knew it was wrong but not why! I'm always walking into a room and forgetting why I am there. Some days I have complete clarity and sometimes I don't, somehow you just learn to adjust to it.

[Flowerpower14 in reply to Dinkie]

That's what Mum's like, she does tend to make light of it but I think it does get on her mind a lot.

[Dinkie in reply to Flowerpower14]

It takes time to adjust. I just think if I have embarrassed myself so be it. Not likely to meet those people again. Those that know me understand it's a case of those that matter don't mind and those that mind don't matter

[Emma7722]

Paracetamol doesn't seem enough for pain relief, however I understand it is her choice for what she takes. Is that all she has been offered for pain relief? Has she been seen by a rheumatologist (I am yet to have my appointment so not sure what it is they do exactly)? Maybe she needs more information about the condition to help. The thing I feel the most is "I am a failure, I have failed my children, my partner and why am I here"? I try to do as much as I can but physically can't and it is torture for me mentally and physically, but I don't want to be seen as "lazy" so try and push myself even through pains and weakness. You sound lovely and it is wonderful that you care so much to ask for advice on how to help. If I could ask for help it would be help with meals and cleaning, and someone that wouldn't mind giving me a bit of their time to help me get around the shops. Doesn't sound like much but for me it would make a world of difference.

[Flowerpower14 in reply to Emma7722]

She's been offered more, and even tried it, but said she'd rather go without for as long as possible so not to become numb to pain relief. I don't live at home anymore so can't help too much with chores, but i do invite her over for meals where possible, and have lunches out etc. I can't fully understand what she's going through but i see the pain and exhaustion on her face and wish i could take it away

[Emma7722 in reply to Flowerpower14]

You probably help her just by letting her know you are there when she needs you and not if she needs you. And don't feel too bad on yourself as there probably isn't any more that you could do. Hope she feels better soon xx

[StayingStrong85]

Painkillers simply wasn’t enough for me by a long long way. Amitriptyline has been the most helpful for me but clearly can’t buy her that she needs a doctor to sort that. As said getting out for small walks is so important so I get out to grab small stuff I need a lot like blueberries! They also help me a load. Trial and error with food is a sad must as we all work differently. Amazing she’s working. I was on reduced hours but my legs wouldn’t let me do that job anymore. I’ll find a more suitable job for fibromyalgia. Phone her for updates or texts if she does that. My mum can’t work technology so old fashion phone would be if it was my mum. Hope she learns the best thing for her soon. I’m fresh to this fibromyalgia crap life change but I’ll get there!

[Flowerpower14]

How do blueberries help if you don't mind me asking? She does struggle with work, but they have made adjustments for her, until she can find something more suitable. I can't imagine how you all cope with it

[M0AL61 Moderator Volunteer]

Your mum is so fortunate to have such a kind, caring daughter. Just reassure her that you are there for her, and not to be afraid to ask for your help at any time if there is ever anything she feels she needs help with xx

[Mochapoise]

I have fibromyalgia as well, l kept telling myself l will be fine . I always had painful period, unbearable cramps and heavy period. Years went by and finally l am getting rid of it . Have been booked for a surgery to get rid of it.

[Violetta25 in reply to Mochapoise]

Mochapoise what are you getting rid of? The fibro or the periods?

[Mochapoise in reply to Violetta25]

The Fibro

[Violetta25 in reply to Mochapoise]

I didn't know there was an op. Have you got any details you can share?

[Mochapoise in reply to Violetta25]

I went to my GP in feb when l was in so much pain.. she sent me for a scan and was l told have got multiple Fibroids and l was referred to a gynaecologist.

I have been given a date next month for a surgery to help me get rid of it .

[Violetta25 in reply to Mochapoise]

Oh that must be so good to be able to eliminate a major cause of discomfort. Hope all goes well for you

[Mochapoise in reply to Violetta25]

Yes thanks 🙂🙂 will be pain free few weeks from now finger crossed 🤞

[Treewade]

Listening without judging adapting there’s something’s she won’t manage some days and some days she will each day is different and sometimes she won’t remember or be able to think straight she sounds like she wants to be in control and independent just support her doing that xxxxx

[Elf6]

Aw I think it’s so lovely that you want to understand fibro for the sake of your mum! That really is so refreshing! Unfortunately though it really is a complex thing and we all respond so differently to it. I also still work however I am only 32 with two young kids so would never want to not work at this point. I do find some days much harder then others but I am slowly learning after ten years of diagnosis to pace myself! I also think the most important thing is acceptance! Accepting that you can’t do everything you’d like, accepting that you will often have to turn down invitations and sometimes last minute and accepting that this is how you are! In terms of how you can help I think the fact that you are trying to understand this will be a massive support to your mum! A listening ear and an understanding when she has to cancel arrangements will also be a great help! The brain fog used to scare me too! I used to think people were trying to wind me up when they were saying, ‘we’ve already talked about this’, or ‘well you said you’d go’. Used to scare the life out of me not being able to recall conversation! But now I do just laugh at myself! I still manage to look after my children safely, I remember very celebration assembly and parents evening! To me I remember the REALLY important stuff, so I’m content with that! Keep researching so that when you Mum gets upset or worried you can refer her to what you have learnt! All the best to you and your mum xx

[Hidden]

I’ve been having regular Accupuncture and my pain is much more controlled and I’m about to start cbd oil! I’m on strong pain relief for other issues but am slowly reducing other drugs and I’m only able to do this by the help of Accupuncture and hopefully the cbd oil will help with more! X

[Nuttyshirlz]

Hi i also live alone and I used to work full time but not now. I get my food home delivered but did that when I was working makes life easier. I’m also head stong and believe I can do it all myself. I go out couple of times a week. I’ve two adult sons who would help me but I’m still trying to do everything myself like I tell my sons I’m sure Id ask them one day lol I suffer with it everyday but I’m not ready to give yet and Unfortunately this is a lonely illness too. But you find ways to entertain yourself. I’ve also arthritis to.

[Scoo1961]

Hi 👋

I hope your mum gets better .

The doc could give other medication

She could join a fibro meeting in her local area ?

I found antripline helps me sleep and is good for the pain .

Keep positive is the best thing 😊

[Flowerpower14 in reply to Scoo1961]

I believe she joined a facebook site for support and other information, I'll look into the meetings, not sure if they happen round here but I'll look, thank you

[RayB]

Flowerpower,

I would just like to say your mum is so lucky to have you.

It is a difficult condition to understand even for those suffering from it,, let alone explain other than in very general terms,, if it was only a pain in a finger we could point to it but often the pain is so diverse and widespread,, then there is the different types of pain some that move around,,, the stiffness,, the digestive issues, the mental problems and the isolation that comes with it! You are doing all the right things,,, Listening,, trying to inform yourself.

Your mum will be trying to adjust to Fibro and perhaps thinking that it will get better or go away,, I think we all go through that in the early stages to one degree or another. Then you come to a point of realising that you are probably going to be like this for the rest of your life,, that can be hard. There is always the fear of tomorrow and loss of independance lurking somewhere,, the being unsure of what is going on in your body,, or mind.

Perhaps the worst bit is trying to explain the condition to relitives or friends who tell us that they forget things,,or have pain,, or don't sleep well. The most offensive is probably "You look very well" So often marraiges fall apart and familys fall apart because of fibromalgia and lack of understanding.

It's just some of the things we have to live with and it can be hard.

Your mum will need time to find what she can manage and what she can't,, this is one of the parts that takes time to learn.

You will find your place eventualy,, at the moment it is enough to just be there for her, just listen.

I hope my words are of some use!

Best Wishes, Ray

[Flowerpower14 in reply to RayB]

Thank you for that, it was very useful. It's hard watching someone go through this but can't imagine how it is to be the one actually coping day to day with it. I'll keep thinking of ways to distract her or just treat her when I can, I'm a total mummy's girl so I'd do anything to help

[Keepstrong]

Hi flower power.🤗

I have both Fibromyalgia 20 year's and Myalgic encephalomyelitis for 18 year's and it's wide spread from my head to my toes, no muscles not effected by it or nerve endings.

Here is a link of s doctor who actually has it himself and is very cross with the Medical professionals who just don't think about it.

This guy is very good.

He also has lots of video's that will help both your mammy and all you loved ones.

There is also so very many others who have videos that are doctors with advice on YouTube.

If you can bring your mammy out every day even for few minutes to one get her out the house away from the having a Chance to think about the horrible muscles twisting and spasmed limb's also if your mammy can soak in a warm bath if lavender Epson salts every day for 10 minutes or more but make sure he'd towel is on a warm radiator close to her and that her clothes or night wear are also warm for her to climb into after her bath, this will really help her.bur make sure when she's getting dried that it's ankles upwards that the towel is doing. Thus helps her oxygen and her blood supply to travel up the body property.

If you're mammy only had a shower then she's to use the head the shower pointing upwards on her body not on the holder downward because the same reason as the bath it's oxygen and blood flow regulator to prevent spasms tremor and muscle twitching.

You can also get her Deepheat cream and also Deepheat disposal heat pack. They last up to 12 Hours these will help so much with the pain.

Here is the link of that doctor I mentioned. Look up his video fibromyalgia behind the BS aswell.

youtu.be/oVQhisMtM9Y(Not working as expected?)

Others for pain relief to use is YouTube guided imagery pain relief by Jason Stephenson and also another is meditation vacation and there is lots more.

Also you could suggest that she goes for a warm soft massage but when booking make sure to tell them to have towels kept warm to be over her and also to mainly use very gently pressure and not to do what's called cupping and hacking. It's important she dosent have that done as it can cause a severe spasms. I was also a Swedish masseuse years ago.

Also if it's a day your Mam is to sore to be touched then wrap a long very soft throw over to wrap her up in with warm soup and a good film on TV to take her mind off her pain. Also so important that every single day no matter how she feels, that she dose at least five to twenty minutes of Physio. It stops everything from seizing up on her.

I hope this all helps. A lot of my members in my physical health support group find these help big time.

Be well and stay strong 🤗🙏😇