My mums work friend has recently been diagnosed with fibro. Due to conflict of interests I have to make sure to keep detached when helping her deal with this awful sentence...
I've never met her, and I'm currently writing out a hello email from me to her. I've had my condition for about 5 years, and to be honest, I can't remember too much of how I felt before the sickness...
What advice would you give?
Here are the bullets I've got so far...
1. DON'T GIVE UP.... Even if its just keeping your mind active with a simple book... Try and stay engaged and don't let fibro define you
2. Healthunlocked fibroaction board
3. Lyrica... Can be a sinner... She's really struggling with this drug,., I suggest she needs to talk to dr
4. Take every minor achievement - no matter how small - as a massive achievement
5. Exercise when you can.. Even walking up the stairs once more than you would
6. Eat right; see a nutritionist
7. Acupuncture
8. Push to see a specialist
Anything else guys?
Fibrosam
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fibrosam
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Hi Fibro sam it is essential to try an regain a positive mental attitude. I am a tremendous believa in humur and keeping your smile muscle engaged some how it lightens the load.
Joining a group wether on line or for coffee twice a month you gain unsights into what is happening ti research, others, techniques and of course new friendships which help us not to feel alone.
Hope this is useful xgins
As she works as I am employed but now on sick, I would advise her to have a look at sickness policy and sickness pay. This as caused so much stress for me and I've ended up worse. I now deal with occupational health and when I need to speak to work I do it through emails. I agree with a positive attitude and keeping the mind busy, if possible keep active.
THe best thing that I learnt was to PACE myself, I.E. If having a shopping trip with my daughter make sure I could rest that evening, If going out for the evening with friends make sure I was doing nothing the next day and could rest. This was difficult for me because I was used to being active but I learnt to listen to my body and rest when i needed to.
I agree with Kasha above - Pace yourself! When doing any activity whether showering, washing and drying your hair, hoovering, shopping, cooking - ensure you have regular rest periods in between. If you can only manage one activity that's fine, it depends on how you feel. Sometimes you won't be able to do anything and will need to completely rest. When you can manage an activity, rest afterwards for a period of say 15-20 minutes. Then if you can manage it do something else and then rest again and so on. I learnt Pacing Therapy through attending a local CFS Clinic (Chronic Fatigue Syndrome), which helped me manage my Fibromyalgia no end! It changed my life, it really did. I had my own Occupational Therapist who was so helpful and supportive, all on recommendation from my GP.
Another point - perhaps get a referral to a Pain Clinic to help you manage your pain.
Get your meds reviewed, they might not be helping you at all. There are meds that can help, it's a question of finding the right one for you, the right combination of meds etc. If the ones you are on don't work, speak to your GP about this.
If your GP isn't helping you or understanding your plight, ask for a second opinion or perhaps a referral to a Rheumatologist where you can be fully assessed, given meds that hopefully will help you and you will be frequently monitored.
Try to stay positive - it's easier said than done especially on bad days! However, there is no doubt that when we don't feel positive all our symptoms are worse, mine certainly are. We are also affected by the weather - when it's colder our symptoms seem heightened, so keep warm, this all helps us feel more positive.
Be aware of your Fibromyalgia, if there is any change in your symptoms, report this to your GP as your meds might need reviewing or you might need a referral etc. Fibromyalgia can evolve, it doesn't necessarily stay the same - our pain can increase or decrease, our fatigue can escalate or improve, it can be very variable.
Join a support group local to you - talking to people who have Fibromyalgia, meeting for coffee or a drink and chat can be very therapeutic. If you can't manage to get out, being part of this forum here at FibroAction can be a great comfort - you aren't alone here, we all understand.
I agree totally with Kasha that "pacing" is one of the most important things - tell her to look at the website -- paintoolkit.org -- it gives great advice on "pacing".Tell her to try and include a healthy balance of activities each day (e.g. walking, relaxing, baking). Also she should try and find out as much about the condition as she can -- nhsinform.co.uk has a good section on FM. Also tell her not to be afraid to say "NO" when family, friends and work colleagues are expecting too much of her. Finally tell her that if she wants any friendly advice then she could also join us all here on HealthUnlocked
PS fibrosam I think that this is a great thing that you are doing -- trying to help your mum's friend understand FM is a really kind thing to do when you are trying to deal with it yourself! Well done
Hi fibrosam .. So hard isnt it go say the right things . I am in the same position friend of mines daughters boyfriend has just been dignosed he is 21.. You are saying all the right things also Be honest ...expect to feel sad and angry, for others not to understand ,list of net support. it takes a while to come to terms with it all, it is hard work but so worth it . Stay positive try not to get into bad habits .Life can still be good,fun and rewarding . I have had fibro for 23 yrs and my life is good considering the problems I have ...
Well done for supporting someone that really needs it at this time
Ps.. Remember not all treatments suit we are all different .I noticed you put acupuncture i reacted really badly to this dreadful pain that took ages and hard work to redress.
Great advice and what a source of inspiration you are for her...
To add my penneth worth...
Meditation and to love, appreciate and care for HERSELF...as she would a loved one... As this is sometimes what we miss doing and try and just put a brave face to the world.. oftentimes it can go against us. She is not alone, however the journey with fibro is one we have to fight by ourselves, inner and outer... so yes connection with others but also to recognise when she needs space just to be herself.
i visit a faith healer/and remedial massage lady! she helps with my knotted muscles and helps by letting me talk about my problems i have been going to her for years, every other week.
If she talks to her dr and needs any help at home she can contact ot and there give her alot of help she might need if its needed at. Home,stay positive that she's not going to let it beat her ..sending fibro hugs to all x
I would add that do something phisical every day how ever small. The sessions I had with fibro team taught me stand up press ups, easier than they sound. The told me if I could do the same exersises every day even if only two reps of some of their suggestions it would help body remember what it should be able to do. It helps and makes me feel less of a broken thing.
Oh and listen to your body not what doctors say is best for you.
i do try and listen to my body, its getting the doctor to listen sometimes i find frustrating at times! but do try and keep smiling and gentle hugs to you xx
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