One of my tasks in the New Year (after discussing with GP) was to decrease Duloxetine and possibly try something else as the hyperhidrosis side effects were becoming so problematical for me and, after working well for nigh-on 3 years they also now had reduced effectiveness at controlling my pain despite an increase in strength to 120mg per day.
However, thanks to a long bout of Norovirus over Xmas & New Year I did not take any duloxetine (or any other painkillers) for 2 weeks & I have effectively gone cold turkey on everything! The worst withdrawal symptom for me has been the dizzying tinnitus and other auditory hallucinations but as that is subsiding now, I am controlling my joint & muscle pain with just 4 paracetamols a day at present. I am however feeling rather fragile!
I have requested another GP appointment, but am interested in going down a less medicated route if possible as I have in the past tried amitriptyline, citalopram, naproxen, and pregabalin, all bolstered by additional co-codamol in strengths up to 30/500 and all have only provided short respite from pain, and either left me hyper or zombified!
I would welcome input from anyone who has gone down this route as to what you have been able to gain access to through the GP / NHS so that I know what to ask for. For information, I'm nearly retired at 64, working only a few hours a day for my self-employed hubby & therefore finances do not stretch to privately funded care or help. I aim to restart my yoga & meditation practices & am trying to get help to clear a dedicated space in the house for this, but are there any other therapies, or natural foods or supplements you have found that have helped you live with our, up until now, incurable illness? (I am pretty much caffeine free, don't eat fried foods or takeaways & cook from fresh as much as I am able. I don't smoke but I do like my pint of Real Ale now and then)
Thanks in advance for reading, and here's wishing you all Blessings and Hope for a cure sometime soon!
Denny 😘
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denny_the_wench
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dear denny the wench i wish you a happy new year and hope i can put your mind at rest. i have tạm duloxatin for about two years as can honestly say it helps me a lot. i found taking it at night is the best it helped with any side effects and relaxed me to sleep of course with my pain killers. i hope you find this puts your mind at rest ❣️
Hi Dipydoo, I just checked and I'd actually been on it for nearly 4 years now - like you I found a huge benefit in the first couple of years but that had gradually tailed off and by increasing the dose to maintain the benefits it also added to the increase in side effects. I also found taking it at night was best with the smaller dose - but then spread it out morning & evening day when the dose was increased. I hope it continues to bring you benefit - it certainly gave me my life back initially!
Duloxetine is the hardest to wean off . I too went cold turkey when I got pregnant in 2015. The Withdrawals were so bad. Drinking loads of water helps flush it out.
I use magnesium oil spray for my joints which is amazing. Use gloves to apply as it will make your hands start peeling. Soaking in magnesium Salts is also soothing.
Try water pilates. Are you hypermobile ? If so i wouldn't advice yoga as you over stretch and get more pain. Try Tai chi it's more gentle on the joints.
Hi Rumes, some great tips - thanks 😀 I drink loads of water anyway (Stage 3 kidney disease means I have to keep them flushed). Magnesium Oil Spray - OK ... added to the shopping list - thanks for the tip about the gloves. I struggle to get in and out of the bath so I have a shower chair in a separate shower, but I'll get some salts and give a bath a try again (when hubby is at home to help me get out of it 😆).
Re the exercise, I'm not overly hypermobile these days, not since the arthritis hit me anyway, but sadly around Keighley where I live, there are very few water-based classes of any sort - the nearest is Skipton, about 10 miles away, which has one class called Aqua-Fit a week. I had looked into going to see what it is like, but have not managed to get there yet. It's in the morning and I'm usually rubbish until after lunch. The Yoga I do is Satyananda - which is more about breathing and control, rather than striking the strong poses, I've tried some of the other versions and found them too hard for my joints (although that was before my knee replacements!). Tai Chi I did 20+ years ago when I was a carer for my mum and loved it - thanks for the reminder, I'll see if I can find a local class.
Hi Denny, I am 63 and suffered a road traffic accident 40 years ago and all the orthopaedic problems have led to fibromyalgia since 2019. There were too many bad side effects for my with Duloxetine and when I came off it I became suicidal.
I spent a month at a pain clinic and meditation did not work for me but I did enjoy the gym sessions. I ended up buying an E-bike which helped a lot. I started doing 4 miles and got up to 35 miles a day and felt better for it. Unfortunately I needed my left hip replacing for the fourth time and I have two tears in my right meniscus so haven’t ridden for a year and really miss it.
Cycling might not be for you but swimming or Logan might be.
Hi R (love the name! I'm a biker too - with an engine though 😉🏍️)
Had both my knees replaced in the last 36 months so potentially cycling might be something I could get into for exercise, especially as I've managed to keep losing the weight I needed to lose before the ops. The only problem is I live up a LOT of hills so whilst setting off would be "wheeeee" I think getting back home would be a killer... maybe that's where the e-bike comes into play
hay Denny, lot of literals in my first reply to you - soz.
Swimming or YOGA(!)
I too was/am a motorcyclist. I worked for one of the bike mags and had a BAD road traffic accident at 23 so the multiple fractures and operations led to fibromyalgia.
I’d love to still be riding but don’t think I have the strength to hold one up anymore. The E-bike certainly helps up the hills and you can dial in the power as and when you need it. Gentle spinning would be good on the knees as it is low impact. Try one, the bigger cycle shops usually let you.
At the pain clinic they asked me “to dissolve your mind in the sound of the seagulls!” Not my bag, so I found exercise.
Sorry to hear about the smash, I guess it's something we live with given the quality of a lot of drivers - especially these days. You and I are the same age so I've most probably read stuff you've written in the mags as I've been a biker since I was 21! Also sad to hear about the issues coming off the Dulox as well... I had those tendencies beforehand, so I'm aware of the slide into the pit. I will admit to feeling more aware of extremes since Xmas - I blew up and shouted about something this morning and then thought - hey, where did that come from!
Thankfully, I still am & thanks to the new knees I just bought myself a Moto Guzzi V100 Mandello (been a Guzzi girl since my first LeMans when I was 24!). When Fibro first really got me I'd had to dial down to a 750 as my muscles couldn't hold up the 1100 Breva I then had, but I was determined not to give up - even considered a trike at one point (but no room in the garage with all hubbies bike "projects" lol)
I've really had to work on my spoon theory though - if I want to do a ride or rally at the weekend then it's rest, rest, rest before and rest, rest, rest after & remember to take the painkillers with me. I will NOT let this damn condition rule my life though. I'm rallying this weekend and it will be the first time NOT on the Duloxetine, so it will be interesting to see how I cope... I've just been packing the pharmacy bag 😆 just in case.
I have an exercise bike in our outside office... maybe I need to get that pulled away from the wall and work on it! Yoga, as I said in an earlier post, I'm trying to get back to, I love swimming as well - I'm a scuba diver too and that is something I've not been able to do since I was diagnosed, once in the water was fine, but lugging the tanks and clambering on and off boats and RIB's just got beyond my capabilities.
I've not been offered pain clinic so I might ask my GP about that - although "dissolve your mind in the sound of the seagulls" that made me laugh... all I could think of was seagull shit on the seat of my bike at a Whitby rally one year! 🤭🤭🦆🦆🦢🦢
ha ha, we have traveled a similar path! I’ve had 48 bikes so far the last one I raced was Maria Costello’s IOM Classic TT Suzuki XR69.
A KTM 640 I had fell over and I couldn’t pick it up which was then sold in 2019; I’ve really got an itch for a Triumph 1200 at the moment.
I too have a scuba licence and have dived in The Red Sea and the Caribbean as a cold Stoney Cove didn’t do it for me! Totally sympathise on lugging kit brown the beach! Dive boats rule.
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