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The UKFibromyalgia Forums • View topic - Help List - please add whatever helps you



Help List - please add whatever helps you

Any tips on what helps you including alternative medicine.

Moderators: perseus, *Lisa*, FluppyPuffy

Re: Help List - please add whatever helps you

Postby CarrieH » Thu Feb 07, 2013 7:47 pm

I find the wheat bags sometimes help, but on bag days I can't even feel that they're hot against my shoulder or hips. Same applies for a hot bath, although often that option does help to unstiffen me a bit in the morning. I've invested in loads of thermals, my biggest problem at the moment is trying to cope with cold and I'm struggling to find ways to cope with that. I never thought I'd be spending a fortune on a pillow, but after looking round found the Tempur Cloud pillow was the most comfortable for me. That made a huge difference. Prior to that the pain in my shoulder and neck was only letting me sleep for 1 to 2 hours a night. A few months after that we also got a new bed, we went for the pocketsprung with memory foam on top and it's so comfortable. I seem to have spent a fortune one way and another this year trying to find things that help me to cope.
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Re: Help List - please add whatever helps you

Postby Pepperty » Thu Feb 07, 2013 8:05 pm

I went through a year of migraines, until I changed pillows, so I know exactly what you mean Carrie, since using soft memory foam pillows I haven't had any head/neck pain ...even shoulders? so I think its a worthwhile effort testing new pillows :-D Its the nearest feeling to floating on a cloud, climbing into my bed :lol: Its money worth spending I say!

Morning baths dont work for me, cant unstiffen to in the tub :-? but a warm shower does, a bath at night is great for me, unkinks and loosens me nicely (for falling into my fluffy bed)
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Re: Help List - please add whatever helps you

Postby Ambercatgoddess » Fri Mar 22, 2013 1:46 pm

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Re: Help List - please add whatever helps you

Postby jason25 » Sun Mar 31, 2013 2:55 am

i agree with the person above me i have used that plant last couple of days to see if it helps and i never felt so pain relived in my life first time taking it knocks ya sill but after the first time its like pain free city and it works like a charm
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Re: Help List - please add whatever helps you

Postby Iceskatemum » Sun Mar 31, 2013 11:26 am

Getting off the subject of ilegal plant material and back to other helpful products.:-

I am on the recommendation of a friend going to start taking epsom salt baths . It appears many of us can be low in some minerals that our body needs to make energy and taking a bath in Epsom salt /magnesium ?? is supposed to help with the Restless Leg /or in my case arms & legs.

Will keep you posted on how I do

Pepperty with lace up shoes this little tip might help .....I used to do it when my kids were small and couldn't tie thier laces quickly enough when they had P.E in school

Exchange your laces for broad elastic of the same colour and loosly thread the elastic through the shoe as if it was a lace then again tie loosly so that it looks like a lace and if necessary put in a small stich to keep it all together. That way you can still get your foot in but your shoe still has the look of a lace up shoe.
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Re: Help List - please add whatever helps you

Postby LouLou » Sun Mar 31, 2013 2:31 pm

ISM, please let me know how you get on with the salts.

My mum was doing a bit of research about minerals and energy and the links between FM. She's got me these tablets which hav magnesium, calcium, vitamin D and a few others to take 1 tablet twice a day.

I'm starting them tomorrow, I'm willing to try anything to see if it works lol.
What doesn't kill you will only make you stronger ;-)
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Re: Help List - please add whatever helps you

Postby chookie » Thu Jun 20, 2013 11:37 pm

IBS - Probiotics from Holland & Barrett Strawberry Chewable x 2 every day, Digestive Enzymes after every meal, Colofac from my Gp for spasms and pain.

Vitamins - V2000 from Solgar - rocket fuel with added B vitamins. Calcium/Magnesium for night time cramps.

Periods/PMT - Cerazette mini pill from my Gp, Agnus Castus tincture for hormone balancing, Clary Sage essential oil diluted in carrier for a stomach massage.

Sleep - Inhalation of 3 drops of essential oils such as Ylang Ylang or True Lavender on a cotton pad in bed or 8 drops in warm bath water along with some fragrance free bubble bath to hep disperse the oil.

Sweating - Anhydrol Forte roll on for excessive sweating (used once a month with amazing life changing effects) and one low dose paracetamol with breakfast.

Bed - Vi-Spring king size mattress with his and hers sides, mine is softer than hubbies and we don't roll together either. It doesn't have to be turned either. Egyptian cotton sheets and pillow cases for the sweats!

Feet - Softlites shoes for college available from Shoe Zone at £10 a pair - black slip ons with extra padded sole... heaven.
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Re: Help List - please add whatever helps you

Postby painprincess1 » Sat Aug 31, 2013 7:37 pm

finger-less glove
knee support for elbows as they stay on nice
message oil specks for itself.
wrap around back strap
shoehorn
extra pillow for between knees in bed
flask of hot chocolate if i no im in to much pain to sleep and saves walking down stairs to make one,or if u wake up in pain xxxx
smiles and the world smiles with you. cry and you cry alone.
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Re: Help List - please add whatever helps you

Postby SuzyVB » Sun Sep 01, 2013 5:34 pm

Not medication but I couldn't live without my body length pillow its so versatile I love it
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Re: Help List - please add whatever helps you

Postby Re-create » Thu Nov 14, 2013 3:45 am

Things that I find to be of some benefit with fibromyalgia...

There's a lot I've put into place and a lot I've worked on and am still working on...

It's a very long list and a bit scattered but I want to suggest EVERYTHING I have found beneficial, (that I'm able to remember) to help whoever I possibly can...

Hope it helps someone, if not many!

Its not in order of how helpful each thing is btw... Just in the order my memory was able to recall it all.

I put the points in and separated it all out a bit so those who struggle to read, like I do, can skip the extra bits and jump from point to point...

• The first thing I got to help myself was a soft but firm foam wedge for my car seat, they cut a hole in the foam bit so my coccyx didn't have pressure on it and then put a layer of memory foam over the whole thing. I still can't be in a car without it even on short trips. This has been one of the most helpful things for me... I had it made for me at a rubber shop so I could get home from the holiday I was on - 12 hours drive away - where I fell on my coccyx bone and really hurt my spine which after 3 months of severe pain resulted in a diagnosis (Finally!!) of FM 3 years ago. I've had many symptoms of FM - "mobile pain" as I call it, utter exhaustion, the sicknesses after sicknesses etc for more than 20 years though. I guess due to the addition of a number of different things that happened in my life which caused serious long-term and physically unsustainable panic and anxiety, as well as grief and trauma and depression etc my body and health got so badly affected that the doctors finally took it seriously enough to help me with the pain relief I so desperately needed and figure out what the problem was with me, as x-rays, MRIs etc despite showing some things, never showed anything near enough to make sense of the agony I was in

• Vitamin B12 injections - helps with that absolute exhaustion where you really struggle to move any part of your body or function at all - as opposed to the constant / standard exhaustion of FM that we suffer every day, I haven't found it helps much with that

• Keeping my distance from sick people as much as possible. Most are too thoughtless or selfish to let me know even though I've repeatedly let them know the necessity as the suffering is so much greater with FM and I often get pneumonia and / or pleurisy added to the flu - Really - who needs it!!!

• Crocs (I wear them almost every day in warmer months)

• Dr martens boots (when I'm capable of bending over to do up laces - which isn't often)

• Dr martens Mary Janes (I wear them almost every day in colder months)

• Slippers with 2 pairs of lambs wool insoles AND arch supports (I wear these all through winter whenever I'm at home)

• Mindfulness / being aware - especially about movements, but also to control the negative thoughts that bombard me and to relax my muscles and get rid of extra pain by reducing tension as much as I can etc

• Meditation

• Pilates

• Exercises from physiotherapists I've seen including using "Therabands" in stretching exercises

• Acupressure (acupuncture was a horrendous experience for me but helps some)

• Bowen therapy

• Massage (gentle, definitely not hard - that's just torturous and doesn't help me at all!)

• Grabber claw stick thingy

• Stool in kitchen to reach things and to sit on when I'm desperate for a break while cooking or cleaning

• Hammock to relax on on my balcony

• I moved from a busy busy city to what's like a tropical paradise - 4 hours north. My backyard is literally a rainforest!! This has changed my life enormously! There are some of my favourite beaches - 4 of them - within a 10 minute drive which I can manage sometimes. It's unfortunate that's my limit cause there's plenty more 30 minutes or more drive away. Being in nature, doing stretches or artwork or reading or writing on my balcony amidst rainforest trees and birds, walking on the beach or by the lake and ensuring my puppy gets exercise which also MAKES me get some is of such an enormous help to me!!!

• Puppy - makes me walk, comforts me, makes me laugh more than anything or anyone else does, can't say the 5:00 am starts are helping the fatigue though! Also the pulling on the lead is a really bad thing so I now take her places and throw a ball so she gets to run and have the exercise she needs without adding terribly to the pain while still getting myself out of the house when I really don't feel like leaving my little coccoon/ sanctuary/ comfort zone

• Mattress in the lounge room so I can be around my family and watch movies especially if I can't sleep

• BIG heat-bag (I had to make one myself because there's none big enough for my whole back - made into a backpack-like thing so it stays in place even while I do things - yay!)

• Stick on heat pads for car trips

• Sunglasses

• Water

• Tea

• Chocolate

• Lollies

• Cake
(I know sugar's not meant to be good for pain with FM but I find the benefits outweigh the negative effects sometimes, it obviously has to be in moderation (unfortunately) or you gain weight amongst other things which makes things even worse)

• Home made mead (honey wine/liqueur - no preservatives! Can't drink most of the things I used to enjoy because they add to pain, give me terrible headaches or nausea or just taste bad to me now - probably due to medications affecting my sense of taste. Not a good idea to self-medicate with alcohol and I keep it to a strict limit despite the abundance of it that I have in the house because I make it in 30L batches. Adds to my pain making it so I make it worthwhile, then 6 months later when it's at its best it really helps me as it relaxes my muscles, dissolves the tension, helps my nausea - due to the honey - and some of my pain and slows down my mind and makes me think more clearly and positively)

• Healthy food (especially needed to make up for naughty foods at times)

• Porridge or yogurt seem best for me for breakfast

• Cooking dinners in big batches and freezing them in portions - BIG HELP!!!

• Battery heated liners/tops (wouldn't mind some pants too!! I bought these online and got the ones with a big area on the back that heats up - awesome invention! Helped me cope so much better last winter!!!)

• Reading new bits of information on medical websites and in books about pain that are helpful (mostly it's all the same content but there's a bit here or there that is helpful occasionally)

• THIS FORUM!!! I only came across it yesterday in a desperate need to find something helpful and I have been reading like crazy and feeling comforted and like things I've been struggling with have been confirmed by others meaning it's not a problem with me but rather a problem (well, so very many problems) that FM is responsible for or is the cause of. So many of these things are not included in the medical sites' information and it makes you feel like it's just you or a whole lot of extra things on top of FM, not just the many different aspects of the broad spectrum of the rainbow of suffering involved and included in the FM syndrome diagnosis... The sense of validation that has come from this has been one of the most helpful things that I've found so far!

• Pacing EVERYTHING (as well and as often as possible - still got a lot of work to do with this one!!!)

• Trying to do one thing at a time - in times where I can even do one thing, so I don't go into overload and become stressed and anxious and frustrated AND CRANKY!!!

• Stopping what I'm doing when I need to instead of pushing myself to finish whatever - this is something I find really hard to do most of the time! So necessary though!!!

• Not overdoing things to make up for "lost time"

• Prayer and prayer from others

• Being led by my spirit instead of my hectic mind

• Being appreciated for what I do and can manage to do for others which often I REALLY go beyond my limits and push myself to achieve - so appreciation especially at those times when I have nothing to gain from my efforts, would be awesome! Very rare indeed though! (At least in my world...)

• Asking for help (frustrating as it is, it's better than pushing myself beyond my limits and adding to the pain - especially when it's really quick and easy stuff for someone without FM to do)

• Limiting time with people when necessary - especially those who really don't get it or don't get me or those who get to me! Takers are the worst! Especially with FM!!! There really is a limit to how much we can give and people, I find, tend to want to push us way beyond those limits repeatedly

• The occasional and affordable bit of retail therapy

• Perfume - weird but somehow it is pleasantly distracting sometimes and is a nice thing amidst a world of not nice things - particularly misery and pain!!!

• Aromatherapy

• Being heard out so I get even as little as my whole 2 sentences out instead of just 1/2 the information I'm trying so hard to put the messy thoughts into words and sentences to explain and relay information to others. So sick of being cut off all the time! I talk as quickly as possible, sum things up into the smallest amount of words possible and still get cut off! This essay I'm writing about things that have helped me with FM really is an exception and I'm only doing it to help anyone who I possibly can with my own experience which I see as being a worthy cause because it's such a horrible "dis-ease" to have to cope with so constantly. It is absolutely relentless and so very difficult to tolerate so I figure the more help offered, the better!

• Rest - when rest doesn't add to the pain

• Sleep - when sleep doesn't add to the pain

• Pillows pillows pillows (even though they still feel like bricks)

• Hot showers (I find baths too hard to get in and out of and mine's not deep enough so there's always something getting cold which isn't pleasant. Can imagine a hydrotherapy bath would be great and am going to be looking into that. Spa baths are great too, unfortunately I don't have one)

• Electric blanket

• Electric throw rug

• Sunshine

• Music - playing it, listening to it

• Arty stuff - mosaicing, making jewelry, painting, drawing, basically anything creative and enjoyable and manageable. Want to start crocheting but I'm really struggling to understand it! Brain just doesn't seem to get it because of fibro-fog

• Real friends - you know, the ones who are there for you occasionally when you need help, rather than just wanting your help and having nothing to do with you when you're no longer physically capable of helping them - yet to find me some or even 1 of them!!!

• Letting go of the past and bad memories and regrets and negative thoughts

• Fixing what can be fixed and accepting what can't

• Letting go of expectations of myself that are no longer achievable

• Being as gentle and caring as possible to myself - especially as most of the time no one else is (this is hard to do and takes a lot of practice and I'm by no means where I need to be with it yet!)

• Patience and tolerance (from myself and others) instead of always expecting to or being expected to function like a "normal" person

• Allowing myself the freedom to do what I need to do for me rather than always putting everybody else's needs or desires (and ridiculous and unhelpful and uncaring pressures) above my own needs, especially but also desires

• Working at problems to fix things instead of letting them go and having them get worse and in "friendships" if the other person isn't interested in fixing things... Letting them go, no matter how much I may not want to - this is a need, not a want! If circumstances don't allow me to completely let them go, having as little as possible to do with them

• Being understood by even just 1 person

• Being heard

• Being cared for occasionally

• Comfortable clothing that doesn't need ironing or hand washing

• Watching tv or DVDs

• Reading

• Writing

• Writing lots of lists to help with memory issues

• Fentanyl patch 25mcg

• OxyContin

• Oxycodone

• Cymbalta

• Panadol osteo

• Somac

• Laxatives!!!

• Vitamins and magnesium when I feel the need

• Home made yogurt to help nausea and IBS

• Limiting shopping would be a great help but I live 1/2 an hour drive from the shops and the driving or getting a lift more often is a problem, so I have to do a lot at once, whenever I can - every 2 or 3 weeks, on top of my doctor's appointment, chemist and wherever else I have to go while I'm there... Way too much in a day unfortunately!

• As comfortable a mattress as can be found (and afforded) Going to look into memory foam toppers

• Limiting stress as much as possible whether in my mind or by staying away from others (when needed cause isolation's no good either - tempting as it is!!) bringing me to my next point...

• Going out - especially into nature, socialising when I'm able to rather than when others try to force me to for their sake - not mine!!!

• Saying "No!" When needed... even to myself!!!

• Reminding myself that no matter how bad it is, it could be much worse.

• Being grateful that even though they hurt... I have both of my arms and both of my legs... It would be much harder without any one of them!!!

• Staying warm when cold and cool when hot (to the greatest extent humanly possible at least!)

• Stretching

• Walking (on soft surfaces - like sand)

• Being as positive as possible and putting on a happy face when I can and laughing (generally more than comes naturally) to get the endorphins going... But also being "real" because there's no good that can come from being fake in the long-term... Allowing myself to just feel how I feel without expecting myself to cope better when I can't. It's not always the best thing for me to force the happy face which is often done for the sake of others, so that I'm not a drag to be around but also so that I'm not seen as a whinger due to all this suffering being so very invisible and belittled by others.

WOW!!! WHAT AN EFFORT!!!
I'M EXHAUSTED NOW!!!

That's all I can think of at the moment... I'm surprised by how much I've actually put into place and I would never have realised if I didn't start writing this list.
It's all been a whole lot of work to establish - especially where my mind's concerned - with fighting depression and feelings of inadequacy and uselessness and worthlessness etc but it has been worth the effort, especially as - for me - the pain keeps getting worse and more widespread and more debilitating, rather than any better. It's like a constant flare up, there's no good days and the flare up just continues to be added to. If I hadn't been putting all this effort into doing what I can to help myself - even in small amounts - I can't imagine how much worse a state I'd be in, nor do I particularly want to!

Finding balance/equilibrium in life when it constantly needs to be adapted with all that's associated with FM etc is REALLY difficult but I still do my best to attain it.

All the best to all you fellow sufferers! It's comforting in a strange way to know I'm not alone and neither is anyone else with this horrific "syndrome" We're all in it together with many similarities as well as our own unique stuff and reading other people's experience/tips/struggles helps A LOT!!!

Whatever you do, don't give up, no matter how bad it is!!! You can cope even when you feel like you can't. The boundaries of what we can tolerate seem to be pushed far beyond our limits over and over again but we survive it each time. Suicide is not the answer. Good stuff comes from becoming stronger. Try to find something good that has come from the bad wherever possible.





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Re: Help List - please add whatever helps you

Postby FluppyPuffy » Thu Nov 14, 2013 4:40 pm

I've removed your duplicated post Re-create. The forum Gremlins like to take control of clicky button when they can and try to wreak havoc with it :facepalm: :facepalm:


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Re: Help List - please add whatever helps you

Postby Re-create » Fri Nov 15, 2013 12:21 am

Haha! They do it seems! Thanks!


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Re: Help List - please add whatever helps you

Postby rosiebee » Tue Nov 19, 2013 12:11 pm

epsom salts in a hot bath-so relaxing+does ease the pain a little.but you need at least a mug full...worth it! ;-) ;-)
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Re: Help List - please add whatever helps you

Postby nannyogg » Fri Dec 06, 2013 9:17 pm

My husband suggested this and it really helps me...if you have trouble with grip opening jars, bottles etc, use a piece of non-slip matting (the lightweight stuff you can get for keeping stuff still on car dashboards; you can usually get it really cheaply in pound shops :D )

If you put it over the lid before trying to turn it it does most of the gripping work for you, so you don't have to apply so much pressure. Happy Hands!
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Re: Help List - please add whatever helps you

Postby Angey » Wed Jan 15, 2014 9:10 pm

Hi everyone out there. Ive had FM for nearly three years now. I was training for a marathon and just a few weeks before i badly tore a muscle. A years later the pain in my leg was not only as bad but my whole body was in pain. My arms legs and neck felt like they'd totally seized up. I couldn't bend them or if i managed to, i couldn't unbend them!!! I've since discovered that injury can trigger FM.I eventually was diagnosed with a blood test.

Anyway, I'd like to share with you the various natural remedies that really help me. I take a cocktail of them every morning as I was very reluctant to use steroids. My father took them before he died and I saw what they did to him. As steroids were all my GP had to offer, I came home and gradually did a lot of on line research myself.

I've given myself three years. If the pain is unbearable after that then I MAY consider steroids but in the meantime I seem to be able to cope using the following - the main and most helpful natural remedy is Devils Claw. I REALLY know it if I've run out and haven't taken it for a while. The rest of my cocktail consists of White Willow Bark, Bromelain, Ginger Root and Turmeric. These are all natural anti-inflammatories. I also take Glucosamine as I'm in my fifties, along with high dose Magnesium and Zinc. Also I take Siberian Ginseng and finally 5-HTP. For those of you unfamiliar with 5-HTP it is a natural Seratonin and has changed my life. I no longer have palpitations or anxiety. I did say it was a cocktail!! But it works.

My pain and stiffness are greatly reduced and I'm learning to live with the levels I do have. I bought one new remedy a month until I had the whole lot. This meant I didn't have the initial expensive outlay of buying a lot of tablets and also means when one runs out I still have the others to tide me over til the new order arrives. I buy on line. Its a lot cheaper. Try it everyone. It will take a few weeks for it to start taking effect but it really really works. Xx
Last edited by FluppyPuffy on Wed Jan 15, 2014 11:19 pm, edited 1 time in total.
Reason: Split large paragraph into smaller ones for easier reading.
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