Hi, I have just been recently diagnosed with fibromyalgia and struggling to get my family to understand.. at the moment it feels like they are denying it all saying 'I can't have this much wrong with you'.
So without my families support, I have been trying to get some help with how to make every day life easier without what I call 'pain attacks' where my muscles hurt and make me twitch. I have looked at maybe water aerobics? Seeing if there is a specialist personal trainer? Has anyone tried this and did it work? Any other advice would be greatly appreciated. My boyfriend has been so understanding and lovely about this and has even been out on walks with me or even just kept me company when I was in so much pain I couldn't get out of bed. Its just my parents and the rest of my family who won't even read the leaflet my gp has sent home with me for them to read.
Thanks in advance.
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Giraffe111111
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Its very hard for us to understand let alone others The only 2 phisical symptoms I have are my legs want move when am trying to sleep or rest and the other my belly swells up so much it hurts everything else can not be seen but most certainly burns,screams or aches glad you have someone on your side my wife is my rock my ever ticking clock ... stay safe
Early days yet and your family may be in denial. Look at this way, if you saw someone who could do things one day and not another, who looked perfectly okay on the outside with no external injuries how tolerant would you be if you hadn't been diagnosed with fibro? Invisible illnesses are difficult to understand, fibro particularly as it seems to be different for all of us. I'm not defending their reaction but trying to understand it from the other side of the fence.
Have a look at the spoon theory if you haven't come across it before and "fibromyalgia, a letter to the well" this might help explain to them, when they are ready. Perhaps your boyfriend could help explain things to them as he seems to be very understanding and a great support for you.
Listen to your body and don't try on your better days to get everything done just because you don't feel as bad. The art of pacing is important, do a little and rest. If you dash about on a better day it is more than likely that a flare will happen. As for exercise, gentle is the key. Tai Chi is popular as it anything in water. Personally I can't manage without my chiropractor massage. Word of warning if you go down this route, find one who is aware of fibro and how it can affect the body where pressure is concerned.
I have found that diet plays a part for me. No processed foods at all and no refined sugars. Epsom salt baths help relax the muscles, heat pads, tens machine, biofreeze gel, gentle stretching and a stroll all have their part to play in keeping me mobile.
You may find CBT useful, some do or a referral to the pain clinic or a specialist fibro clinic. I went to the Guys and St Thomas's one. It's a single appointment but you would see several specialists, physio, rheumatologist etc who would then put together a plan and forward it to your GP.
Lots of information on here, don't be afraid to ask any questions.
Thanks for mentioning the letter to the well. What an amazing piece of writing. It explains fibromyalgia so very well. I will certainly be putting it in my Christmas cards. That's if I find the energy to write some. 🤔
You are welcome - all part of being part of a wonderful community willing to share experiences. All down to the job the great mods do in keeping it a safe, caring and respectful site.
My friend and I used to do Hydrotherapy with used to be fantastic for us so I would imagine water aerobics would be as good but just be careful not to overdo it otherwise you will be in more pain. Hydrotherapy would be better.
The only reason we stopped is because the pool closed down and is being demolished.
Bless u x i had hydrotherapy at the paddock pool and there are physios that help there with fibro patients but i had to pay but it was lovely there. I hope you find something x
Hi Giraffe, I'm sorry you feel so let down by your family, especially your parents but maybe in time they will understand and come to terms to your diagnosis, being unwell and in pain is both hard for the person going through it but also hard on those around them, just in different ways. On the exercise front I have been doing aqua aerobics for about 12 years now, it's an arthritis group so the exercise are made for people in pain, a very social group which helps just as much as the actual exercise. If you can find a support group then I would highly recommend giving it a go.
Glad you have a wonderful boyfriend for support, maybe give it time but once they see the days you have too rest threw pain and or fatigue the Penny migjt start too drop (as the saying goes)a lovely reply from Dinkie and agree would your boyfriend chat too them ? For me I differently have too stop and pace when pain and fatigue shows up, a bath early evening generally helps me settle in for the night , (does cold weather affect you at all? ) if they read some of the posts here they might get a better idea of what it can be like for people, I am hoping soon they will take this condition you have on board sending hugs xx
Hi Giraffe111111 👋. Diagnosed with fibro probably 20 years ago and family still don't get it. They read up on it and can see how it can affect me but they never really get there. What I found out after meeting other people with fibro is the only people who really understand the pain, the fatigue, the mental anguish are other fibro sufferers. So see if you can get yourself in a local fibro group where you can talk with people and at least for a few hours a week be properly understood. Take care 👍
Awh thank you for this. It might be worth it. Just been really hard because I want to turn to my family to be there for me, but I can't. I live in the sticks so I will try and see if anyone has a group. X
I’m so sorry that you are having to deal with unsympathetic family as well as fibro. I learned eventually that I needed to surround myself with people who at least try to understand and who don’t judge something they have no wish to understand. It’s so sad and devastating to realise that you’re being failed by the ones who should care the most, acceptance of this comes hard but does bring with it a kind of peace which in turn lessens stress and therefore lessens the ravages of fibro. I wish you well and am sending gentle hugs and positive thoughts your way ❤️❤️
You'll get plenty of support from the group and if you ever get a chance to go to the pain clinic and they offer you a group course grab it as it was one of the best things that happened to me, I made great friends who you knew exactly how I was feeling and talking with people face to face about my own experiences made feel better as I knew they knew what I was going through 👍
i can empathise, ask your hp for referral to a pain management program as i found the one at the walton centre absolutely great.
they specialise in fibro, so beleive you and others members on the course also have similar or same issues which is such a weight off your shoulders after not having support from family, friends and medical staff. we all still chat by whatsapp and support each other.
if you dont live in the liverpool area they put you up in a hotel for the course and provide an evening meal and breakfast for the 3 days each week, for 5 weeks. if you dont want travel im sure there will be a program near to you
It's extremely hard for people to understand how crap you feel & how much pain you are in. Luckily I do have the support of my family. My sister also has fibromyalgia so they are already aware of what daily life can be like! Regarding water aerobics etc I cannot comment as I also suffer with arthritis so getting cold triggers arthritis even more on top of fibromyalgia pain. I've been told hot tubs etc help due to water being alot warmer. GI wish you all the best on this horrible illness! Xxx
Hi, I’ve just been diagnosed too, last week. My husband is onboard with reading up, but my son early 20’s, living at home, is still not acknowledging. Early days.
I think my biggest concern are work colleagues, how to manage all of that.
Hi GiraffeIt is so difficult trying to get someone understand especially when you appear to look OK. My husband wasn't helpful to start off with and his solution was 'to do some housework to take your mind off it'. Gradually he did come round and looked at the leaflet etc. I think you need to say to your parents / family that this a recognised condition that you have been diagnosed with and there are many different symptons - it would be nice if they could read the leaflet because you need some support.
Regarding pain and helping come to terms with this, could you ask your doctor about a fibromyalgia management course? I did one online which was interactive and really helpful.
Water aerobics is a good idea - I do AquaFit (the same thing) and also swimming. You can do both of these at your own pace and they are both good all over workouts. Although your instructor may not be an expert in fibromyalgia, they will know how to adapt an activity or give an alternative.
Remember you are not alone and the lovely people on this site always have a listening ear!
I've tried really hard not to reply your post, Only because when I read it I instantly felt the inner pain in my heart, (just checked,No I'm not having a heart attack) With this horrendous illness the last thing you need is so called friends and family who are not prepared to support you in your time of need,
Fibro is a real illness and you need time to grieve for yourself and learn a new you, Not in a negative way,Just a new you, A you that can be strong and find other ways of coping ( trying to)
Although we are all different with Fibro and do things differently to make our lives liveable the very least we can do is talk to people that know what you are going through and offer you time to say, You can do this just hang on tight it's gonna be a bumpy ride,
There will be times you think you can't get out of bed, We all do, Stretch as much as you can and tell yourself you're having a duvet day, They'll always be a box set you'd like to catch up on, Even if you don't actually watch it but you can hear it,
You will need some hobbies or such like to do when you are waiting for pain relief or just relief from your pain,nothing drastic, Mine are colouring, Knitting baby animals, card making and mini albums and making beaded items, ( ear rings, bracelets etc,etc)
I'm just learning to crochet amugurumi ( sorry can't spell) some I do in bed or I have a spare room for all my crafts, It just really depends on how much pain I'm in at the time, All the crafts I do I have learnt from you-tube, (At last something on a computer I can use to my advantage ) Christmas is almost upon us, A weighted blanket and a heated throw has amazing self comfy cosy, I know by now your thinking, Blimey she rattles on,
I have no friends anymore ( no problem,I don't have to listen to moaning all the time and being unkind) I have 2 adult step children and a really fantastic Husband, My neighbours are great too,
I have an electric chair, sometimes I use a walking stick, (more chair nowadays) I love to take my 2 yorkshire terriers to the local park, The fact of just being outside and getting fresh air can work wonders, If you smoke,stop, If you drink,limit,
You have age on your side, Please use it, ask if you can have a doctors double appointment to discuss your pain meds (If you want to go down that route) Some of us can find other ways to cope but you don't need to suffer more than you have too,
I have no medical experience and always talk to your doctor, I really do hope your family will learn how precious you are and the role you take in life, Well done to the boyfriend
Awh thank you for your reply. It means alot! At the moment it's just trying to find ways to adapt. I love doing puzzles and just recently got the new Murdle book which is amazing. I woke up today so stiff and my legs were in agony, I had to push through with it due to work. I cannot afford to not work at the moment! But lucky I sit down most of the time when I am there so it's not a problem.
I used to dance quite alot and used to love it. But at the moment the stress from all this other stuff, I think, have caused more flare ups than I would of liked!
I have a doctors appointment very soon and I will mention pain medication. I dont want to be on them just as yet because of how old I am. So I'm going to see whether I can get referred to a health coach thing.
Hi, you might find magnesium oil/spray helpful for your muscles, particularly your legs. It doesn't work for everyone but it's always worth a try. Also Epsom Salts in your bath. I've used a vibration plate for years, find it really good for my muscles although some people can't tolerate them I adore mine 😊
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