Medication

[Becks2020]

I’m new on here... How have people changed there lifestyle to suit fibromyalgia and what medication/remedies do you all take?

Thank you

Becky x

[Hidden]

Hi

I'm so sorry you have this awful condition. I had to finish work in June 2018. My boss had and still is brilliant but she was right as I have many conditions causing pain. It took me a long to accept this but I know she was right. I take oramorph, zomorph, duloxetine, indometacin, codeine and nortriptyline. These take the edge off otherwise I wouldn't be able to get out of bed in a morning!! Love and hugs Lynne xxxx

[Becks2020]

Crikey I’m so sorry Lynne you are suffering, when and how did they diagnose you? it’s such an awful thing I’m just trying to get to grips with it and what to do best regarding medication and lifestyle xxxx

[Hidden in reply to Becks2020]

I do have other conditions which doesn't help!! Love and hugs Lynne y

[Becks2020]

Thank you so much Zoonie, iv been given all sorts of strong painkillers in the past with miss diagnosis iv had tramadol, codeine, Gabapentin, diazepam, it’s been a total nightmare x

[Becks2020]

My joint pain has gone on since I was 15 I am 27 this year and they still are unsure of a diagnosis but many drs think it’s fibromyalgia I’m just waiting for a confirmed diagnosis from the rhumertologist, previously over the last 12 I’ve been tested for, IBD, lupus, rheumatoid arthritis, psoriatic arthritis, Sjogrens disease the list goes on! X

[desquinn Partner Volunteer FMAUK Trustee]

Just to give balance, I take tramadol and find it the best thing so far. I was on 4-6 a day and decided to reduce it without any issues at all. Now I manage on a single dose in the morning and an occasional breakthrough one depending on activity. Use other things as well like activity and pacing of course.

We are all different is what I am trying to say,

[desquinn Partner Volunteer FMAUK Trustee]

We are definitely different and we do not know what works until we have experienced it. But some are life changing and I also think that the application of the meds can have a great impact.

[Hidden]

Hi

I had meds thrown at me years ago, stronger and then stronger again to the extent that they caused liver disease which has now progressed to compensated cirrhosis, what I'm trying to say is just be careful everyone. Take care Lynne

[Badbessie]

Medications are very individual. I have over the last four or five years tried most of the medications normally given for fibromyalgia. Sadly they had no positive impact for me. The only medication I now take as needed is codeine and during really bad times oramorph. Being new you will read stories of how badly some medications have affected others. Keep an open mind as some of the medications that did not help me really helped my wife who also as fibromyalgia.

Pacing and goal setting helps me. I break my day into little parts and set little goals. I also exercise very gently. Keeping moving is very important. When first diagnosed the hardest thing was accepting the condition and at times the limitations. Above all what I have learned is be kind to yourself and do not judge yourself.

[Kitten-whiskers]

Good morning Becks,

Welcome to the forum, all I take these days is Amitriptyline - once a week to help with sleep.

Thankfully things have improved a lot for me, still a little way to go but herbal and supplements were the way to go with me, after I'd got things calmed down

Best of luck

Debs

[Midori]

Hi Becks,

Welcome to the Fibro club!

Lifestyle changes; I've just slowed down a lot from my previous sporty life, can't do all the things I used to love, including driving any more, as my sight is failing.

Walking is very difficult and I'm on the verge of becoming a full time wheelchair user, but not until I absolutely have to!

I have recently had to move from a house to a bungalow, as stairs were becoming a Big problem

I'm a awkward person, If I feel I can do something, I will. I won't give in to the Fibro until it forces me.

Medication; I used to take a lot, Omeprazole for gut acids, Pills for blood pressure, (until it was discovered that the problem was stress, not an organic problem, Cholesterol I had statins for, but I won't take them now.

I was on both CoDydramol and CoCodamol, but dropped the CoCodamol as it didn't work for me.

Now the only things I take are Ibuprofen, and CoDydramol for when I am really desperate.

I also take Vitamin D (as Cod liver oil) Vitamin C, Vit B complex, Glucosamine , Co Q10 and Vit E.

I have a personal philosophy; Fight the Fibro, treat it as the Enemy.

Cheers, Midori

[Becks2020]

Thank you all for your help and advice it’s fab!! Everything works differently for each person, at the moment they’ve given me co-codamol and iv also got tramadol but I need to take a big amount for it to work and then it makes me feel sleepy which isn’t safe at work or when I’m driving, I’m taking boswellia complex also which is a herbal supplement, my lower back and hips are the worst pain and I find heat seems to really help them xx

[Allsaints49]

I still work with fibromyalgia so I probably don't have it as severe as some do. I now take amaltriptyline 10mg at night, which has helped to draw me into a deeper sleep. I also attended a 6 week pain management course which I found very helpful. Xx

[Becks2020 in reply to Allsaints49]

Amazing, thank you!!! Xxx

[Kariss]

Hi Becks, welcome! I have rheumatoid arthritis and fibromyalgia with it (it often goes together). I was diagnosed 10 years or more ago so I’ve learned a few tips over the years to share! Most important I think, is to listen to your body and pace your activities. For example when I wake up stiff and still too tired I take things slowly until my body has relaxed a bit, or I have a warm bath and don’t rush to get started and if I’m lucky an hour or two later I can get on with my day. (Fortunately I am retired now but when I was working I still found this helped.) Over the years I have been prescribed various pain drugs but so far nothing has been successful without side effects and I got fed up with feeling like a guinea pig! Now I only take pain medication if I feel really dreadful and literally can’t function. I try to relax instead. I listen to music, take quiet little walks and use mindfulness to relieve symptoms. If necessary I will take paracetamol and can top it up with co-codamol if I really have too. If my joints are really bad I can take an ibuprofen but the doctors aren’t keen on me having it really as it interferes with the dmard meds I take for my RA. I also have migraleve for migraines. I did try cbd oil for a few months which helped somewhat but is expensive to be using all the time. My best friend is my wheat bag and my hot water bottle and find warmth is both comforting and soothing when I’ve seized up! In the past I’ve attended a pain clinic course run through the hospital and can’t recommend this enough! It taught me how to pace myself by recognising when my body has done enough and needs to rest. Also how to do ordinary household tasks in easier ways thus protecting yourself from exhaustion and pain. My last tip is to learn to say no to people so that you aren’t wearing yourself out doing things you find too difficult or are too tired to manage when your body is complaining as this makes your condition worse. I’m really bad at saying no and it takes courage! Also take whatever help is offered by friends and family - jobs shared are jobs halved leaving you more energy for other things I do hope some of this is useful to you. Good luck!

[Becks2020 in reply to Kariss]

Amazing advice thank you kariss! I have thought about cbd oil myself but not sure where to even start my best friend is my hot water bottle! X

[jools56 in reply to Kariss]

Hi Kariss, I agree with you 100% about the pain management programmes, brilliant. "The 3 P's...planning, pacing and prioritising. I am better now at saying "no" to something if I know I'll just be storing up trouble for myself, and have had far fewer flare ups, and can turn down the pain with the relaxation techniques I learned. I also I ask my OH for more help now, and he has been very willing to do so. I also use CDB capsules which I get from a well known High St health store, cheaper when they have their "Penny Sale" on, as you get 2 lots of capsules for the price of 1.

[Kariss in reply to jools56]

I agree Jools, some of the relaxation techniques are remarkably effective! I actually learned the basics years ago as a form of anxiety and stress relief after a period of post natal depression and have practised them ever since, and it really does help. I was pleased to find it included in the Pain Clinic’s schedule. Also the cbd is good. I researched it well before I tried and bought a good quality uk one. Whether it is a placebo effect for me or not I don’t really care as it certainly helped me feel happier and able to deal with my flares better. I am going to go back on it, last year was just a bit expensive for me with a new grandchild arriving plus my youngest getting married and then a large vet bill for my naughty fighting cat!

[Becks2020]

Thank you I am currently on antidepressants for my anxiety and depression, how long have you been diagnosed with it and how did they diagnose you? X

[Becks2020]

What made them diagnose you with fibro? X

[Becks2020]

Yes as do I hence why it’s gone on for 11 years and every time my bloods come back they are normal, I’m sick of been passed from pillar to post....

[Indi40]

Hi

I was offered pregabalin or gabapentin for nerve pain but was and still am very reluctant to go down that route. I take amitriptyline which was slowly increased to 50 mg which has helped enormously with sleep and elements of pain. As commented above I am prescribed Tramadol but only use it when neck and back pain unbearable for 2 reasons. One being addiction the other due to it disrupting my sleep( I always wake and cant get back to sleep if I have had it during the day). I have found hyperbaric oxygen therapy the best for helping with stiffness, energy levels and brain fog. It's a big commitment but it has definitely improved my symptoms and quality of life. I have also had Maylofacia Release Therapy, may have spelt it wrong!, and it also helps alleviates some of my neck pain. Sadly these treatments come at a cost but as you are all aware you get desperate and will try anything just to get through a day. I hope you find something that will help you and improve your quality of life. Good luck 🤞

[TeoAde]

My advice for you take it easy as you can on daily basis,rest and then keep on going. First you need to listen and understand you body which is hard sometimes,but never stop trying to find the right treatment for you and take every day as it comes and think "Tomorrow isn't an other day, a better day".

It's not easy to leave with fibromialgya but we need to keep on going.

Take care 🙂🤗