newbie

[Rogan1]

hi all , I’m new to this but just wanted to ask - my gp has diagnosed fibromyalgia because of my pain and put me on amitriptaline but I don’t want to take it long term . What else can help ? I have so many pain , sometimes in ankles , sometimes in hip or knee , hands , feet , back . Not sleeping and trying to stay working 30 hours night shift . I don’t want to be a poorly person !!! Thanks

[SpikeDinosaur]

Hi Rogan1, welcome to the group. You'll find lots of advice on the site that will help. Unfortunately, every journey is different and what works will be personal to you.

Just on the amitriptyline though. I was prescribed it when I was first diagnosed. It didn't really help with my pain during the day, but it did help me get a bit more sleep and restore a more normal sleep pattern. After a few months I stopped taking it, but my sleep pattern is still better.

My GP is very supportive and she said that the common thing for all her patients that manage their condition well is exercise. It's definitely helping me. Again, you have to find what's right for you. Alongside that it could be drugs, cbt, heat, or loads of other things.

Hope you find what works for you.

[Gigiruth]

Hi Rogan1

Welcome!

Yes,search the posts on here to see so many things that might help. I exercise.when I can and have a dog that means I make myself go most days.

Pacing,bath salts,crafts and distraction, saying no and self care are part of my plan. Not being too angry when my body just wont work and knowing what is my stress and what belongs to others.

Recognise stress early to head off a crash.

All the Best in finding out what works for you.

Fibro hug

Gigi

[Dinkie]

Hi Rogan1 and welcome to the club nobody particularly wanted to join😊

Firstly be kind to yourself and take time to adjust to the new you. Fibro is different for all of us and what works for one may not work for another. Trial and error is the key.

Personally I cannot take prescription medication and there are a few of us on here in the same boat. I use epsom salt baths to help with the muscle pains. Regular treatments (when funds allow) with the chiropractor (warning if you use this route find someone who understands fibro). Biofreeze gel, tens machine, gentle stretches, Tai Chi, weighted blanket, hot water bottles and a processed food free diet all have their place in my regime. Now the art of pacing, on better days please do not decide that you will attempt to get done all those things that have been sidelined for a while. It is human nature to want to act and get those chores done but if you overdo it you will find yourself in a flare and back to square one. Took me years to get to grips with it!

Regarding work, this is a tricky one. You are covered by the Equality Act 2010 and your employer should be referring you to occupational health for an assessment. I went down this route, didn't want to, but it was the best thing to happen to me. A report was sent to me for approval before it was sent to my employer and suggested reasonable adjustments to enable me to stay in employment and 13 years later I am still working. Any employer who does not take reasonable adjustments seriously is leaving themselves open to an unfair dismissal action.

Insomnia is common, with me I go through phases of not sleeping and then being able to sleep for 4 hours or so before the pain strikes. I have found the weighted blanket works quite well as does making sure you are warm enough. WTS (wonky thermostat Syndrome) is quite common and some of us can be found wearing tee shirts in the winter and multiple jumpers in the summer🤦‍♀️again it's one of those variables that strikes with fibro.

Don't be afraid to ask questions, we are a pretty helpful bunch on here and no question is too silly to ask as you can bet that someone has either asked before or thought about it. I'm sure other members will be along to add their thoughts in due course.

Dinks.

[-JW-]

Gentle exercise works best for me, I self referred on to the Nuffield Gym pain management programme which was excellent. I have built up the amount and different types of exercise I do, a mix of yoga and kettlebell classes plus swimming and steam room. The exercise helps my joint pain, stretches out the tightness of my muscles and I sleep better on those nights. I take no medication for Fibro as wanted to try and manage with lifestyle as my first option, I was diagnosed 10months ago. I highly recommend the Nuffield programme for everyone with any type of long term pain.

[-JW- in reply to -JW-]

Just to add, pacing is also key, which I haven’t yet got to grips with…but on those days where I’m struggling with any get up and go, I’ve found that I feel much better after some movement. The trick is learning to read your own body and knowing when to rest and when to move.

[Wilson16 in reply to -JW-]

A very helpful post JW. Can I ask if you have to pay for Nuffield Gym pain management programme and if so is it a monthly cost? Many thanks 👍

[-JW- in reply to Wilson16]

No, the pain management programme is free. You have to commit to twice weekly meetings which are half support group and half exercise. These last 12 weeks, then you get a further 12weeks free to consolidate. After that they offer membership at a much reduced rate. Hope that helps! It’s the best thing I’ve done for myself since diagnosis, now I swear by going regularly whether it’s for yoga, a swim, a class or just to use the sauna/steam to help with my temp dysregulation.

[Wilson16 in reply to -JW-]

Thank you for your reply. So can I just contact my local Nuffield and self refer myself ?

[-JW- in reply to Wilson16]

nuffieldhealth.com/about-us...

Yes, look up your nearest gym that offers it, apply and join the next start date. Mine runs the 12wk programme 3 times a year starting end of Jan, May and Oct.

[Wilson16 in reply to -JW-]

Ok thanks 👍

[Sparklingsunshine in reply to Wilson16]

Some council run gyms offer a similar scheme, for people with health issues. You get referred by your GP, see an exercise on referral trainer at the gym for an induction and for them to work out an exercise programme based on your requirements.

They normally check in with you after 4, 8 and then 12 weeks and can then offer you an ongoing discounted membership. My gym has a gym, pool, dance studio for classes, sauna, Turkish bath and steam room.

[Loobielu]

Welcome! All the lovely messages so far just about cover everything. I also can't tolerate prescription meds but did find amitriptyline did give me some breathing space and allow me to sleep and numb my mind for a little while. Unfortunately for me it was short lived before it didn't really help and I was faced with upping the dose or coming off them. Others stay on them long term, who knows which camp you will be in. Try everything and be kind to yourself x ps merry Christmas!

[1whitestar]

I take duloxtine and that really helped stopped the stabbing pain too.

[RGriff]

Hi, I was diagnosed with fibromyalgia when I was 16, 31 now. I only recently came onto this group. Everyone here is so helpful and will have lots of information for you. I suffer very bad with joint pain, I find that blue ice cooling gel is very good and also acupuncture gives relief, and of course antiinflammatories always help.

Hope. You get some relief and sorry to hear your suffering.

Rose

[Purplebluebell]

Hello and welcome.

I'm sure you will get lots of helpful advice here. I know the thought of prescription meds is horrible but I still managed to work while taking Amitriptyline which made it possible.

Diagnosed in my 30's and still on it in my 60's but more active now than when diagnosed so don't loose hope.

It's a hard journey so take it easy when you can. See Occupational health for a plan to keep you in the workplace.

Relaxation, gentle exercise plus/minus medication. It takes a while to work out what is best

for you as an individual.

All the best.

[oldsouls]

I still look at this site after long term Fibro like Purplebluebell above. Some of the tips are new to me and the support is wonderful. Just add one or 3 more. Hydrotherapy exercise and heated blanket mentioned above when you want instant relief is good if you can find a physio who does this. Also physio hands on treatment makes me worse and mine wont touch me, but some do dry needle therapy. This is good.

Good Luck

[Kariss]

Hello Rogan1, I am so sorry you are in such pain. As a fellow sufferer I just wanted to add a few more tips. Some years ago I was lucky enough to be able to attend an NHS funded course for protecting your joints which included a session on pain management. (No longer running I’m afraid.) One thing they stressed was to listen to your body and if you are in chronic pain, don’t fight it. Take your pain relief straight away because if you put it off the pain will make you tense up and then it becomes worse. Another thing stressed was pacing yourself - don’t let the pain become really bad, stop and rest - it’s what your body is telling you to do! (I’m not very good at this!) We also did a session where we practiced mindfulness and meditation as this can help relax tense painful muscles. Apparently it can be as beneficial as taking morphine, if you are successful! Of course not everyone would find this easy but there are plenty of pain relief videos on YouTube which talk you through how to try this for yourself, some to music, some to relaxing visuals and some just a soothing voice. Definitely worth a try, and I have used them to good effect! Also, I’d advise to keep notes on how you feel so that when you have to visit the doctor you can be clear about your problems - how frequent they are, how intense etc. I always take a trusted member of my family with me when I go too as they often remember things I might have forgotten. I hope some of this is useful to you. Good luck - this is a valuable place to come to for help!

[Midori]

Amitriptyline is usually used for Fibro as it has muscle relaxing properties, which can also help you sleep. It is important to take it relatively early, rather than at bedtime, as it is often still active in the morning, and if you drive, it could get you in trouble with police, should they stop you.

Cheers, Midori