š„hi everyone! Iāve recently been diagnosed with fibro and Iām looking for ways to cope with the pain and fatigue. Does anyone have any advice they could offer me please? Anything from your experiences with medication and assistive devices, to the things you do to make daily living a bit more comfortable. š„
š„things I do- try to keep warm to keep my muscles relaxed. Donāt overdo or under do exercise where possible. Painkillers and tiger balms/heat sprays. š„
Any advice/tips would be really appreciated. š
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RatArt
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Sorry to hear you are suffering so much. My GP prescribes Amitriptyline and Duloxetine to cope with the pain and pins and needles etc. Take at night. If I am in a lot of pain when I go to bed I put my electric blanket on for an hour which helps me to get to sleep . Morning
I also take Evening Primrose Oil and Co-enzyme Q10 every day.
I find that I need to keep reasonably active and try to walk through the pain for instance, as this stops my muscles from seizing up. If I am feeling really rough, I just rest for about half an hour or so.
The problem is that what works for one person may not for another. Itās a case of trial and error. Good luck and I hope you find something that works for you. ā¤ļøšš
Hi, thank you for the advice. I asked about stronger pain medications but due to me taking an anti anxiety medication I canāt take any neuropathic painkillers. So Iām going to take codeine occasionally as this works when my pain flares up at night. Iām also going to try Evening Primrose Oil and Co-enzyme Q10 every day as you suggested š
It depends upon what anti anxiety meds you are taking. You can certainly take Sertraline with Amitryptiline. Amitryptiline and Duloxetine are both also used for the treatment of depression and anxiety, so may be worth having a chat to your GP.
It is difficult because what works for one person doesnāt necessarily work for another. Keep persevering until you find a combination of meds that you can tolerate but also help you to cope with the pain and discomfort. Good luck!šā¤ļø
Hi I take Amitriptyline 50mg every night and Co-codamol 30/500 when the pain is really bad. The amitriptyline helps me sleep and eases the pain. Some find that Amitriptyline makes them groggy in the mornings, so take it earlier in the evening. I also have a weighted blanket, which is like being cuddled, some people don't like them though. Warm Epsom salts baths are good too. I also use a Magnesium oil spray, usually once a day after my shower is enough to ease the pain in my legs. I gently smooth it into the skin. I try not to sit in the same position for too long, to avoid stiffness in my limbs. I cannot walk far as I also have COPD so I use a Rollator which has a seat, so I can rest for a while.
It's all trial and error, until you find something that really works for you. Hope you find something that helps you soon. xš
Hi, thank you for the advice. I asked about stronger pain medications but due to me taking an anti anxiety medication I canāt take any neuropathic painkillers. So Iām going to take codeine occasionally as this works when my pain flares up at night. Iāll try magnesium oil spray tooš
Hi. Welcome to the club. You're on the right track, pacing is the best advice I can give you. Stop, start, all day if you can, too much of either seems worse. Youll know where youre at best but even sofa leg arm movements help, build up slowly, gentle stretches upright can also help ease the pain from locked up painful areas after a bad flare up. Trial and error is the key. Try to start getting a regular sleep pattern, quite difficult, naps help fatigue, but try to get through when you can. I find natural light and distractions help. Tell yourself you'll close your eyes in bed for just 15 mins at a regular bedtime even if you've napped. Allow yourself to wake naturally. Use natural light again. Or its wipe out and unfunctioning all day, at least in my case. Dont stress, nothing happens overnight. Keep in mind what flares and what works on your journey, make notes for when fog hits. Relook at your calendar on a must do basis, cancel as much as you can while you learn how to optimise your future. Keep anything in that makes you feel good (helps counteract anxiety and depression) but doesn't cost days of pain later. Cancel those that do. Maybe plan and start 4 ish days ahead for appointments etc, to avoid overload and pre-prepare for burn out after eg freeze extra for meals if you're not already, get books/films/art/pamper stuff ready or whatever youre into, so you can get plenty of rest after and to reward your efforts, because you did it, somehow, and you're now moving forward. Getting diagnosed the 2nd - now you know what you're working with. Always a bonus. Find out as much as you can, which you're already doing Everyone is definately different, but pain and fatigue come with it for all. So it is about reducing your pain and fatigue. Eg. I can't take amyltriptline now, so use 400 mg ibuprofen as part of the anti-inflammatory methods, ginger is really great, gut friendly foods also great, but I avoid infammatory foods - you may find you were doing a lot of what you discover/trial already. Avoid anything that doesn't agree with you. Sweeteners, bread, pasta, pizza are out for me, likely fine for others. I do cheat and pay for it later - because life's too short. Have fun whenever you can. Try not to get isolated. Try new things you didn't have time for. To keep positive when stuck in I now watch /read comedy, look at old holiday photos. Perhaps look up anything you think/ know you are a bit intolerant to - there's usually a group of them, be mindful of the others. See how you go. Keep nourished. Even if its vitamins, fruit, water, cold soup, because you just can't cook that day. D and B complex, Q10 often for me and I find osteocare and cod liver oil really helpful too. You likely know your natural sources of nutrition. The sun helps too, if you can get to it. Oh and breathing, the pharmacy suggested menthol crystals in water, get plenty of fresh air. I now have a spray. You'll probably be fine.Yes to not getting cold; bed socks instead of slippers indoors are easier to move around in; free feet at night for circulation when possible. Stretchy clothes, eg sports wear. Water shoes are great. No to heavy bathrobes.
Can I suggest mindfulness of what we wear and how it impacts movement, you're probably doing this too.
Also it's better to get 2nd hand clean comfortable furniture, than sit on anything that now leaves you in abject agony. Use the gas in the office chair to adjust, add a cushion/s, set timer max 15mins, Move. Adjust your home. Sit to do any stuff you can but previously did standing. Little things you already have and slight adjustments can also make big differences. Work out how you might need to rearrange your home to reduce your daily effort quota and get help to do it. The 10 teaspoon method.
So you see how different we all are, or how similar we all are and you'll find your own optimization. It's an interesting journey for sure, but the goals sure make it worth keeping at
Hi thank you for taking the time to write this in depth reply. I appreciate that. Iām going to try lots of the things you suggested including taking supplements. I canāt take neuropathic medication either as it interferes with my anti anxiety medication so Iām going to go through trial and error with different otc meds and the supplements you suggestedš
Hi RatArt, apart from prescription meds, I use hot water bottles and prescription strength ibuprofen gel. The main thing I have found is that it is really important to listen to your body and to rest when you need to. I also use magnesium baths and I know some people find magnesium sprays helpful as well as supplements. Other supplements may help depending on your needs.
Resting as much as I needed to brought up feelings of guilt and shame for me for me in the beginning. But with the support of the lovely members on here I don't listen to the critic in my head any more and I give myself what is needed. I can look at the dust building up in the house and ignore it.
If you work this adds extra difficulties but whenever you have the chance take it if you need to. I'm sure you will find support and caring here. I wish you all the best.
hi, im currently on the pain management programme at walton hospital in liverpool.
im finding this exceptionally useful for pointers on how to begin managing all of my issues.
the mindfulness and meditation is really helpful, the way you think about your pain and live with it and there is also brilliant information on how to do whatever level of movement and exercise you can manage , while pacing yourself.
i would definitely recommend that you see if you have a programme locally or if not ask your gp for a referral to liverpool. i am also offered a hotel and taxi as i am not from liverpool.
i wish i had this opportunity many years ago, but cannot recommend this enough. it is also lovely to be with others who understand you and are having the same problems
the first step is looking for advice which is what you are after on here, so im sure you will manage your pain going forward with support from this community too šā¤ļø good luck and take care x
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Everyone is definately different, but pain and fatigue come with it for all. So it is about reducing your pain and fatigue. Eg. I can't take amyltriptline now, so use 400 mg ibuprofen as part of the anti-inflammatory methods, ginger is really great, gut friendly foods also great, but I avoid infammatory foods - you may find you were doing a lot of what you discover/trial already. Avoid anything that doesn't agree with you. Sweeteners, bread, pasta, pizza are out for me, likely fine for others. I do cheat and pay for it later - because life's too short. Have fun whenever you can. Try not to get isolated. Try new things you didn't have time for. To keep positive when stuck in I now watch /read comedy, look at old holiday photos. Perhaps look up anything you think/ know you are a bit intolerant to - there's usually a group of them, be mindful of the others. See how you go. Keep nourished. Even if its vitamins, fruit, water, cold soup, because you just can't cook that day. D and B complex, Q10 often for me and I find osteocare and cod liver oil really helpful too. You likely know your natural sources of nutrition. The sun helps too, if you can get to it. Oh and breathing, the pharmacy suggested menthol crystals in water, get plenty of fresh air. I now have a spray. You'll probably be fine.Yes to not getting cold; bed socks instead of slippers indoors are easier to move around in; free feet at night for circulation when possible. Stretchy clothes, eg sports wear. Water shoes are great. No to heavy bathrobes. 
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ļ»æHow do you cope with the pain?
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