Hi Guys,
My friend has recently been diagnosed with Fibromyalgia within the last couple weeks, I just needs some top tips and advise to help 1) understand what she is going through 2) how I can keep her positive 3) ensure she is getting the right support outside of my own regarding doctors/counselling etc
Any bit of advise to help would be great!
Thanks 😊
Hi and welcome, Your friend is very fortunate in having someone wanting to help and understand. Firstly I would say your friend needs to be gentle with herself. First stage is grief for the life she had, then she will learn to adjust and accept life as it is now which basically is the same with a few adjustments. Fibro is a label - she is still the person she was minutes before the diagnosis.
I was diagnosed only a few years ago but have had fibro since 1987. As fibro is different for all of us, what works for one person may not work for another. Equally we can share symptoms or have totally different symptoms to other fibro folk, and symptoms like to change, disappear and reappear so what your friend is feeling today may not be what she feels tomorrow. Understanding that something she managed yesterday may have worn her out today and she may not be able to go out or do things and needs to rest.
What helps - that depends on symptoms - aches, then epsom salt baths can help, hot water bottles, wheat bags, tens machine, bio freeze gel, gentle exercise etc.
IBS - not everyone gets this but for myself I limit but do not exclude gluten. I have a totally processed food and refined sugar free diet. If I stray from this, and yes I am only human, then I pay for it.
The art of pacing oneself - incredibly difficult but if she has a better day try not to get everything done that has been outstanding during the not so good days. If one overdoes it then the fibro sprite who sits on the shoulder will want payback. That's not to say sometimes its not worth it, because it is. Sometimes if there is something I am desperate to do then I go and do it and suffer the consequences, otherwise I would never do anything.
I can't take prescription meds so rely on supplements, chiropractor, hypnotherapy and the like. Some members like to use hydrotherapy too.
I don't know where you are based but I found a referral to Guys and St Thomas's fibro clinic helpful. It's only one appointment but she would see several professionals who would then put together an individual plan and send it to the GP. I found it helpful.
Invisable illnesses are difficult for people to understand, I have mobility issues also and have a blue badge but the number of comments I received were hurtful so now I have a sign in the back of the car which says "not all disabilities are visible" and since then I have been left alone more or less!
If your friend works and is struggling or needs some extra assistance she can ask for an occupational health assessment and this should help by recommending reasonable adjustments. I had one and it has made my working life so much easier.
Won't bombard you too much as I am sure lots of other members will be along soon with their own take on how fibro is for them.
Once again welcome and please don't be afraid to ask any questions, nothing too silly or daft to ask as believe me someone will have thought it or asked it before.
Dinks
Thank you for keeping it basic and honest. I’m Thurrock based - but I’m sure we must have a clinic which is near to us that I can look into.
For her she’s in a dark place as it’s a shock and some of her normal support aren’t taking time to try help or understand so I just want to make sure you has at least one person there trying 😊 thanks again
not impossible then to get a train down to London, if you think it worthwhile. It's difficult to find clinics as believe me they are very few and far between. In my borough, with a large teaching hospital, they "don't treat fibro, we just refer you back to your GP" I had to fight for my referral but it was well worth it. Please keep an eye on mental health as it's really hard being in pain all the time and sometimes CBT (cognitive behaviour therapy) can help as can PMA (positive mental attitude). This is hard to be upbeat all the time but if you look at some of the other posts (particularly those of mattoid-mags and myself) we are often on here with lists of jokes and banter. It's not all doom and gloom at all, we are a supportive bunch only too willing to listen to a rant, provide a shoulder to cry on or offer suggestions and ideas.
Thank you soo much and yeah I know mental health is already showing as a problem that’s why I wanted to suggest my attendance straight away, she’s a strong young lady and gets on with everything but I do worry this is a bit too big for her to go through on her own. Hence why I am here!
Spending the next couple days getting information and potential tips and try’s and then will go through with her x
In our borough one can self refer to mental health services, which I did after my visit to Guys and St Thomas's on their recommendation. Our borough may not treat fibro but they are hot on mental health. Phoned friday, telephone consult monday and into therapy following monday. I know not everyone gets such excellent service but the sooner you investigate the quicker the appointment. Good luck and keep us posted.
I wish I had a friend like you! having someone that is so thoughtful to research this condition is a star in my opinion. I hope your friend finds some comfort in the information you get. We're always here to ask any questions you or your friend want help with. Wishing you both all the best
Thank you, hope can give her some encouragement through it all x
Very well written Dinks, you have covered everything.
Welcome back again my Irish matey and thanks for the praise 😁 Do you remember when we were newbies and the endless questions and what ifs! The old timers were kind to us - time to pass it on😁
Hear hear, you're a true caring old timer now yourself 🤣🤣🤣🤣
Less of the old 🤣😂😱😱- might be topped with natural highlights and feel as if I’m 110 but the wit is still as sharp as ever Holmes my partner in crime
Sorry Sherlock, got too excited and carried away 😁😜.
Any new cases for us to investigate partner, need to keep my mind busy? Lol 🙄🙄
Other than the meaning of life nothing to investigate at the moment unless you can solve the mystery of why shoe repairers also cut keys😜
Still pondering the meaning of life 🤔🤔🤔🤔.
As for the other lol...
"Frankly my dear, I don't give a damn." 🤣🤣🤣.
On a more serious note... I have no idea, the mind boggles lol
Hi
What a wonderful friend you are. I have friends like you and know how lucky I am. Just be there for her when she needs it, maybe go to appointments with her as some Drs can be very patronising. Having you there and knowing you understand will be a great help to her. My pain is there 24/7 , I have many conditions. Love and hugs Lynne xxxx
Yeah we have spoke about counselling and said I will go with her even if just her first appointment as I have done that in the past for myself. Just want to be able to hear honest live opinions and tips and not just generic “google” pointers
Thank you 😊 x
Some days it's so hard to get out of bed , the pain is that intense. She might get people saying well you look alright, cos it can't be seen like a broken leg. I had to take ill health retirement last year due to the pain and many conditions I have. I was very lucky, my boss and work were and still are fantastic plus friends and family. I found it hard to accept but I know my boss was right. Love and hugs Lynne xxxx
Thank you I will definitely try and keep her positive xxx
You are very welcome. Love and hugs Lynne xxxx
Hi its great she has a good friend who is looking out for her. As others have already mentioned it will take her time to adjust to her new life it took me over a year to come to terms with it I was diagnosed 4 yrs ago but suffered and underwent every test for 3 yrs b4 diagnosis. The main thing for me was people having patience with me and I foundout who my true friends were alot of them didn't take time to understand that I couldn't do things like I used to they thought I was just skipping events bcoz I couldn't be bothered but if only they knew the times I cried because I couldn't go to the events bcoz couldn't get out of bed or couldn't walk due to pain. She's very lucky to have you try get her to join the site and she will realise she's not alone and there is always someone here to listen xx
Yeah so far it’s been such a warm welcome and even for me who isn’t even going through it, I feel like I have a lot of support. Only by chance I came on here, just take it day by day and let her have her bad days and make the most of her good days xx
That's it as long as ur there for her. Take care n gentle hugs for ur friend x
It’s so lovely that she has a friend like you that helps. She may feel really alone and isolated and may be grieving the body she used to have if she has had to make many adjustments to her life. Something to remember is fibromyalgia isn’t a set thing for everyone, it affects everyone differently even down to the pain they experience and what they are able to do so make sure you check with her what she personally is capable of and what she isn’t. It takes a while to be diagnosed so I’m sure you already have an idea on this but I don’t know both of your circumstances or how long you’ve known her. Something I struggle with is that people don’t take into consideration that I can’t walk as quickly as them or how quickly they would like me to get ready etc. When I had friends, I would have to cancel a lot or feel to guilty to and spend the whole day in agony and no fun whatsoever. Fibro fog is really frustrating, upsetting and angering, even putting things down and having no idea whatsoever where they are. I forget the simplest of things and can’t concentrate at all. That can frustrate people so patience and as much understanding as possible is key. Even on a good pain day, I’m usually a 5/10 so check or assume that even if she seems fine, she most probably is still in pain so be aware of that. Something I wish I had is a friend whom would check in on me regularly, not only in terms of the fibro tho but general chit chat and plans as well. Making an effort to make plans around what’s comfortable for her would be great, ie going over and watching movies with food and blankets on a bad pain day. When she’s been out or has over done something at home, she may need to rest for a few days/ weeks afterwards. A walking stick may help with pain and weakness in legs if she has that, I’m 18 and really it isn’t embarrassing like I thought it would be and I’m able to go out to the shops or around the block sometimes now, even if I struggle. It’s a bit of independence back. I really struggle with stairs and usually need help if someone’s around. Breaks from things are a necessity for me especially with walking or standing, I will need to sit/ lay down after several minutes. A therapist is definitely the best idea I can think of, my mental health has taken a big turn for the worse due to the isolation, sadness and anger at myself and I’m looking for one so suggesting/ helping find someone for her to speak to would be a great thing to do but keep in mind sometimes people are quick to say they don’t need help. Don’t force it, just be there for her and she will get to that point on her own when she’s ready if she feels it will help her. I’d say getting the balance right between support & trying to understand and smothering her, which can be difficult and can change over the day. Pain and other symptoms can be different throughout the day. Try to ensure she keeps up with some hobbies and stays as active as possible. Physio is a must and I’ve just started Pilates and it will be a great thing for her body whilst also having something to do. Things like reading, painting (there are lots of paint by numbers for adults if she can’t paint) etc is a really good idea to keep her occupied and distracted especially during a flare when she’s resting so suggesting these things will be really helpful. Sorry to throw a load of things at you in an unstructured mess, my thoughts come and go so I wanted to get down what I can think of before I forget it haha. Hope that helps a little
Oh also, if she cannot work due to her health, let her know she should look into universal credit so she will have a little money coming in. There are calculators on the gov website that can estimate how much she could get. Also worth applying for a blue badge especially if she struggles with walking and will make life easier
Hi
I use a walking stick as well as a 3 wheeled walker with seat, this means I can stay out longer cos I've got the seat. Love and hugs Lynne xxxx
Thank you so much for your advise xxx
You are very welcome. It will definitely help her if she comes on here. You are a fantastic friend. Love and hugs Lynne xxxx
welcome welcome welcome for you and her bring it all to us and we will help for some of us this is the only communication we have with the outside world so it helps us to help you. This will affect you also for having her in your life and sometimes it will just need to be about you and that's ok too. No judgment here ever. You won't find a better group of people !!
I’m looking forward to getting her on this forum to help her too!
You have had some very practical advice from others re your friend re chiropractor, pacing herself etc etc. Fibromyalgia can affect people differently...I find the weather makes it worse ie when cold, wet ( low pressure) makes pain worse, conversely heat and sun improves it. It takes months even years to become aware of symptoms/pattern, and sufferers can get very frustrated with themselves as they can become unable to do things they enjoyed, or at least do efficiently, before ...for me that is any form of cooking. Recipes that I could do in 10 mins take 30-40 mins, then I need a sit down, or fall asleep. Help or companionship doing such tasks would be good. Also true of gardening, craft hobbies etc, as the activity itself plus clearing away becomes too painful and tiring. Don’t let her do anything for too long, build in rests or changes of pace. It feels like you have suddenly reached your 80s! Can you do something together like tai chi?
Thank you! I definitely thinking of seeing if she wants to join something like yoga or tai chi .. been wanting to look into it for a while anyways
What a lovely person you are, not to mention a great friend. My advice would be to listen to her ,really try to understand deep down. Read up on the condition, be there for her when she is down. The condition can made you dreprèssed. Feel very lonely. You being there for her will mean such a lot to her.
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