Support after Diagnosis and advice

[Kat32A]

I've had my diagnosis now of chronic pain and fibromyalgia last week over a very lengthy appointment, still in loads of pain and even morning stiffness and aches, no mention of using a walking aid if I really need it. we discussed pain relief which after the nurse decided to stay on paracetamol until I speak to the GP,there is one medication called Duloxetine which I could use to lessen my pain alongside the pain relief....I am in. Has anyone in the group been on this medication. Also advice from the nurse about trialling a tens machine but am on a waiting list, has anyone in this group used a tens machine and which is the best one to buy.

[Dizzytwo Moderator]

Hello Kat, these are some of the most asked questions. When it comes down to meds and using aids I believe that's a very personal choice. Not all meds on offer will suit everyone. Its more a case of test and try I'm afraid.

For example I have have had fibro for over 40yrs and use none of the meds on offer. But I do need the use of a wheelchair and a rollator.

Have you used our search box. I am sure you will find tons of information on your question from our members both past and present.

Momo

[Deeb1764]

I have several autoimmune conditions but then got thrown fibro on and my AI meds don’t touch the fibro unless big pain day and i up co codamol. I went from duloxcetine to amtripyline gabapentin one other and now use pregabalin night to aid sleep.

It will be what works for you. I tried tens but if my sensory is high using this machine is like torture! So I bought one many moons ago and did help but lately it’s not.

As all meds not really helping the fibro part my GP is doing the talking therapy route ie CBT so I will see if this helps. Going in with an open mind when it starts in March.

Things that help a comfortable bed, cushions , sleep when. I can and a good diet for me a little meal is better than big meals.

Good luck it’s such a personal journey and watch out how you react to weather rain and wind and I am off the charts. So maybe at the start of your journey keep a journal as hard to keep track of what goes on and when and how meds affect you.

[Welshcatlady]

Hi I use a Rollator if I have to walk any distance apart from the garden, I use a walking stick around the flat and garden, I find using a stick for any length of time aggravates the pain in my hip. I take 50mg Amitriptyline at night, it helps me sleep and helps with the pain too, I don't have any side effects at all. I also have 30mg/500mg Co-codamol which I take when necessary.

I recently bought an EMS/TENS machine, similar to the one that is advertised on TV by Ian Botham, that helps a lot, and since then I've bought a small TENS machine which I will take away with me on holiday. I find they both help with the pain. Both machines were bought from Amazon, there are plenty of choices on there.

[Loobielu]

Hi Kat, fibromyalgia seems to be so individual and it can also feel like a moving target! My advice is to try everything you can face and afford. I brought a tens machine off good ol' Amazon and for me it's more of a distraction than a cure but still worth considering as safe and relatively cheap. I've also tried Duloxetine and amitriptyline but these didn't suit me but many find them helpful. I find heat (heat mat, heated gilet, hot water bottles, wearing layers etc), pacing, keeping mobile and avoiding stress helps me and formulating the best sleep routine and sleep environment possible. I've also had to massively reduce my working hours which hasn't been easy. A stool for showering has been a great aid too. Best of luck x

[moo196]

best thing I have ever done wrt pain is to give up diet coke and everything else with artificial sweeteners in.TENS machine would be my choice over pharmacological methods

[Yassytina FMA UK Volunteer]

My advice if you know anyone that has a tens machine try it 1st, my daughter has mild fibro and can manage using it but for me it was like electric shocks , I am on duloxtene and it is down too choice if the doctor try’s you on this , also giving it time too get in your system and does it work for you personally, we can only try find ways of helping pain daily . We quite often say here trial and error. I hope you find the forum helpful , I certaintly have and always reading new information or advice from our members so welcome and let us know how you get along x

[Wephy]

I have it as an antidepressant that aids my pain but it only really helps with nerve pain and nerve damage so it may help for some of it.

A pain clinic referral would be really helpful as they can also do some physio with you and although exercises might seem counterintuitive when you’re in pain the right stretching is so helpful especially when you’re experiencing stiffness.

Whatever walking aid you choose it’s absolutely imperative that it’s set up properly for your height. Most counties have an OT outreach scheme that you can self refer to.

They will come to your home and do an assessment and provide you with aids to help around the home like grab rails, perch stools etc they can also help with walking aids. The outreach scheme is there to prevent falls and hospital admissions due to injury so may be a better root to what you need than the GP

[Dipydoo]

good evening Kat32A first i would like to say how sorry that you are in so much pain we all know how it affects our day to day life. i have been taking duloxatine for about two years with my pain killers i have been taking them at night wich has been the best for me. i hope they help you and you get some relief from your pain i wish you well 🌼🌼❤️

[Davemayhead]

Hi katI Have been taking this for years and have had no side affects and now my dose has been increased can say I don't feel any better for it but with the cocktail of drugs Im on I can't say much but give it a go and good luck.

[Sarahvit]

Hi Kat,

I really can’t speak regarding which medication is best for pain. My pain regimen has been uprooted about 8 months ago and I am thinking it is a crackdown on opioid use here in the US. As far as a TENS unit I came speak on that. For wide spread pain for me it has not been helpful but localized pain it has been affective in reducing the pain level.

[Purple7265]

Hi Kat, I'm on duloxetine 60mg, but this is to help me get over to sleep along with amitriptyline 75mg. I still wake up due to pain and once I'm awake, that's me up. If I get 3 hours sleep thats good. But it's not great. I tried tens machine but I could not stand the pulsing, it made my pain worse. The most unusual feeli g. Deffo will mot be using it again. But everyone is different. It might be worth trying. I wish you luck. X

[Gaye1963]

You've got some great advice here and experiences. As everyone says, it's very individual. Here's my experience: diagnosed in 2018 and at that point really was struggling with high levels of pain and reduced mobility. Went on 20mg of duloxetine and the immediate side effects were horrible but after two weeks they subsided, with the exception of constipation. I then got the first real sleep for the first time in 20 years, the throbbing in my legs lessened and I was able to do much more. I stayed on it until last year - at 20 mg- when I got break though side effects and carefully came off it. I am now drug free and occassionally take 50 mg of diclofenac when in bad pain.

Following diagnosis I also spoke to a dietician and made changes to my diet, I took up tai chi, and thanks to the boost duloxetine gave me I was able to return to swimming and pilates. I have recently returned to training with a personal trainer who comes to me. And I've downloaded the nhs's Active 10 app, which encourages you to walk atleast 10 minutes a day.

I realise many other people commenting have reduced mobility but from my perspective the duloxetine plus the physical activity I am able to do has made an enormous to my health.

I wish you lots of luck with your journey.

[Nipper11]

Sorry to hear you are struggling like many of us on here. I use a ten machine all the time they take a while to be affected however it did work for me in the end . It doesn't take all the pain away but Neither does pain killers. After many years on long-term strong painkillers, I decided to take myself off them due to the side effects and look for other ways to deal with pain. It's hard, and there's no Cure, and therefore, research and self-help are very good for you . Look at your mindsets and push your GP for support . Going on the list for the pain clinic and other support groups will help. You can buy a ten machine from anywhere look at Lloyds chemist or Amazon . They are all different price range to pick from, and they all do the same thing. Warm baths plus vitamins like Magnesium are good to take. There's load of information on this site, which will support you take a look when you can. 😉 it will be very helpful. Good luck. Keep pushing forward for help and support from your GP .