Continuous pain

[Kimwhit]

Hi all. I have was diagnosed with fibromyalgia about 4-5 yrs ago after lots of years of testing. At the moment I am in constant pain in my lower and upper back, hips, knees and feet. I am taking meds but they don’t work long enough to get any type of relief. Is there anything you have tried to help manage the pain?

[JayCeon]

Yes... I've tried 60+ things, 8 things help me: Have you tried !gentle physiotherapy, back, hip & leg exercises, yoga and otherwise, hot water bottle, ice cold showers (10 secs. to 1 min., legs first), arnica cream, osteopathy, acupressure, whole body cryotherapy? The latter 2 help me most.

bmihealthcare.co.uk/treatme...

[Kimwhit in reply to JayCeon]

Thanks I will try these, I have tried osteopathy a few time and a aromatherapy massage but they only help in parts. I also do stretches when am not in too much pain. I think my main problem is I work 12hr shifts on my feet so the standing really agitates my lower back. I will definitely look into all of these. Thank you

[JayCeon in reply to Kimwhit]

Ah, standing! Is it possible for use to use a turnable (praps height-adjustable) bar stool, or at least in between? That way you could change from the standing position.

I'm having success with adapting exercises to the position I'm in. When standing I first do some standing exercises, with stretching and turning arms and shoulders, without & with holding elbows. But especially as you say for the lower back, which is also my main problem, I've started doing lying down exercises standing! The ones where you only use your legs are the least conspicuous, if that's a problem. You just have to do one after the other of course, cos you have to stand on one... E.g.: flicking legs back (or back & forward) one after the other, tracing circles on the ground, cycling. If arms are OK: one arm and one leg up and down, both arms up etc.... Does that help in any way?

And your thighs are OK with the standing, tho? My burn about in the middle, which I need to put heat on or sit/lie down if possible.

Also I'd take all breaks lying down, active/exercising, legs & arms up, as often as possible....

[Kimwhit in reply to JayCeon]

I do try am sit down when possible but my job requires me to be on the move all the time up and down steps etc... I do a few exercises at work in the change cubicle when I can. No my thoughts don’t hurt standing but my calves, ankles knees and hips do. They tend to sting a lot. I will try those other suggestions you have mentioned though as any relief is a bonus. Thanks

[Yassytina FMA UK Volunteer]

12 hour shifts on your feet no wonder you ache that’s some going with fibro, Id be heading straight for my epsoms and the bath , warmth and a soak does help me I do notice the difference if I’ve missed my daily bath , the one place I seem to get comfy is laying on my bed with loads of comfy pillows after my evening bath and try and switch off when I’ve had quite a productive day, I use bio freeze during the day, one of the better ones Ive used, I normally order mine on Amazon if Boots etc don’t have any . I have soaked my feet in some salts too, light massage on my feet is good(I do have a volunteer for that other half)but if not I get some nice cream and do it myself , hope this doesn’t sound too obvious but I’ve keep my feet well moistured etc as we can be on them a lot and if we’ve no heel cracks etc makes it so much easier. I hope you take what ever tea breaks are offered that’s a long day for you XX ps My doc allows me to use codiene but only when my pain threshold is higher as cannot be used all the time, but does seem to kick in for a couple hours to ease the pain .

[Kimwhit in reply to Yassytina]

Yes I have codiene which I take 4 times a day and pregabalon but neither help much but I know I am a lot worse without them. I will have to get my other half to volunteer a foot rub 😆. Thank you for your advice it is appreciated

[sidsue in reply to Kimwhit]

I am 65 next yr and have found Pregabalin, at night does help, diazepam stops severe spasms and zo-morph helps the pain too ..amripalin for femeral siatica and siatica down backs of legs ..Paracetamol when in pain every 4 hours till subsides as I get constipated///

[Kimwhit in reply to sidsue]

Thank you for your reply, I think I may need to try a load of new things and also see my dr about changing my meds

[Cumnock]

I have had fybromyslgia for many years and nothing helps the pain. Its nice to go swimming and then into the sauna baths that helps me to relax and tire me out more.

It helps if you can take an hour out and try to read a book for a little while.

Sorry cant help about the meds. I have fybromyalgia osteoarthritis acgilles tendinitis ans djupytrens disease snd am in agony. I have tried everything but only alcohol helps a littl.

😊😊🌈🌈

[Kimwhit in reply to Cumnock]

So sorry to hear all your problems, it must be a nightmare, however I do agree with the alcohol 🍷 bit 😊. I am wanting to try swimming again but can’t by me at the moment as we are in tier 3 so everywhere is closed. Thanks for your comments though, nice to know am not alone

[Cumnock]

Everything is so difficult with Covid. When we do get some freedom just try it. It does help.

Have a nice soak in the bath instead and some nice chocolate and wine after.

Look after yourself ❤x

[nadine111]

fibro can be hell. what helps one day is useless the next. a few things that have helped me are-a warm/hot bath with Epsom salts, diclofenac sodium topical gel, pain patch, yoga (yes, it can hurt like hell but does help over time, acupuncture with someone who works with fibro patients, and my trusty heating pad that starts above my neck goes down to hips. i'm so impressed that you are working. please be proud of your accomplishment. i miss working. forgot-socks for constantly cold feet.

[Kimwhit in reply to nadine111]

Thank you 😊 x

[StarLight75]

Hi I have been thru all the pain meds over the past 10 yrs and as people say they dont take away the pain they just mask it for an hour or so and make me lethargic an drowsy at the same time but 1 thing I find helps which no doc or specialist ever advised me on was my diet I done a lot of research and found diet plays a huge role in our chronic pain and illnesses so I started to be self aware of what I ate each day I wrote everything down that I thru in my body fluids foods supplements vitamins an prescription meds and after a while I started to notice all the different things I was consuming had a different effect on my body and mind and eventually I realised what things effected me an made my symptoms worse it’s a long discovery but I’m getting there by eliminating what I’ve found triggers my symptoms the most and it’s quite surprising what foods and drinks effect us because I can honestly say after a month of a certain elimination it works it just takes a lot of discipline tho being strict with our intake but it’s been the main thing that’s helped me this last year than all the pain meds in the 9 years before I wonder if anyone else has had any experience doing this eliminating of certain foods that trigger our symptoms just thought I’d share my experience food for thought so to speak it’s actually surprising how our foods effect our bodies and our mind... have a little research on it when you are on good day maybe worth your time good luck an best wishes I hope you find something that can help🙂

[Kimwhit in reply to StarLight75]

I know what you mean about the foods, I will start a food diary and see how I go. Thank you 😊

[JayCeon in reply to StarLight75]

"I wonder if anyone else has had any experience doing this eliminating of certain foods that trigger our symptoms" - Hmm, I need to keep a very strict diet, developed over 30 years, because of my hyperacidity (probably caused by my dryness, praps Sjögren's), IBS and now hyperlipidemia. Trying gluten-free and low-carb didn't help me. There's still a little I am experimenting and changing, like a few weeks ago I realised that tomatoes weren't harming my stomach, but massively irritating my rectum, which has stopped now I've gone down to one or less a day. As I just said, I've also just researched whether my hyperacidity and my dryness may be connected, and found this valuable resource:

joyfulbelly.com/Ayurveda/ar...

But this all 'only' helps my "inner skin", not Ache, pain, exhaustibility, tiredness etc.... But I know of others who would recommend at least trying gluten-free 1-2 months.

[MaggieSylvie]

I did an elimination diet for my ex-husband many years ago (he had multiple allergies). I can't remember precisely what I did but I do remember writing an awful lot down, and you have to consider every single item of food, including trying different cooking oils. There are many more available than just the sunflower and at the time, rapeseed oil was considered the safest and purest of them all. Everyone's different but sugar was a total no no for him. We visited an allergy specialist who pointed out that frequently, the culprit is our favourite food. He pointed to a young child in the clinic at the time who was covered in boils and it was down to his favourite food - potatoes. Do you have any cravings? Start by eliminating them! There must be some literature out there that could help you get started. Good luck.

[JayCeon in reply to MaggieSylvie]

Elimination diet: One think that helped me was having some form of bacteria (can't remember the name) because of which a doc (decades ago) recommended only eating about 6 foods for a few weeks. Cheese was one of them, which I loved... (But now hyperlipidemia means avoiding it.)

Every single item: I had a special salad in the canteen with "nothing" irritating in it, dressing was oil and vinegar. But I kept getting stomach-burn. So I asked: What oil and what vinegar? They didn't know, had to look up and found the vinegar at herbs in it...

Cooking oils: I always thought sunflower was good/OK, at least for salad, because of lots of unsaturated fats (therefore not good for frying, because they turn into unhealthy components), and olive oil was only good for frying, because of many only mono-unsaturated fats. Now I've learnt that sunflower isn't that good, because they have way too many omega-6-fatty acids, which we have enough of. Better is olive oil, because not too many saturated fats. And best for salad is still - as you say - rapeseed oil, which is my fave.

Sugar: Studies are finding out more and more that sugar (incl. many alternatives like xylite) is very unhealthy and addictive. A few months ago my wife warned me when I was leaving fats but still eating apparently healthy organic sweet foods. Now since I have hyperlipidemia, too high blood fats, I have been told by all my 4 cardiovascular docs to not eat sugary stuff any more, because it could "kill" me in the long run. The limit in yoghurts etc. should be 12%. Tough, because I love sweet stuff, so am grateful that people out there are creating new foods that taste fairly sweet without much sugar in them. Also now knowing that complex carbs are better than simple carbs, so even some fruit is better than other.

Cravings: Not surprising, if you get cause & effect the right way round. It's not that you crave for something that's bad for you, it's simply that you then eat too much of it. But this is only one small component. Actually I loved fizzy drinks when I was a kid and didn't like unfizzy water etc. I often thought: Wouldn't it be terrible if I were ever not able to drink fizzy stuff any more. Then about 20 years later I realized that fizz is carbonic ACID = acidic and could be irritating my stomach hyperacidity, tried it and realized... damn!!!

Literature: I had to start this expedition 30 years ago and there wasn't much literature then, at least not to be found. And it still seems like sisyphos-work now. Why has no-one been able to point out the connection between hyperacidity and dryness, why did I have to have the idea myself? Interesting though, that I found it on an ayurveda-page, old wisdom which we in the West have probably lost and ignore far too much... I'm glad when one experienced doc or nutritionist can tell me *one new thing. Then I find a page which explains a lot in one go...! Thanks to the net...

[Kimwhit]

Thank you, sounds like this is the way to go as it’s is helping others

[JayCeon in reply to Kimwhit]

Kimwhit - *one of the ways to go. My diet stuff (I think) only has effect on my stomach & gut, and blood fats. On the other hand, diet and rheumatism (and the whole body...) is connected so why shouldn't some fibro-people be helped by foods too. But back, hip, knees and feet you're asking about sounds more like physio-stuff'll help.

[MaggieSylvie]

Acidopholus is one of them, I think. My ex had trigeminal neuralgia among other things, and if he had sugar it would flare up badly. And yes, you are right - the overeating of one food can lead to an allergy not the other way round.

I try to get Rapeseed oil which we use for cooking (I say try because I understand it's going to be in short supply soon) but I use olive oil for my salads. I'll try using rapeseed instead.

We were on a nature cure diet and would go every Saturday morning for osteopathy followed by a nature cure lunch, for about 8 - 10 people, It was good honest simple vegetarian food cooked by the osteopath's wife (in Belfast). We would be educated about the balance of diet at the same time. The only thing I didn't like was being told to stop eating "fries" (chips and other fry-ups) and stop eating red meat. I rarely had fried food and never ate any kind of meat so I resented being told to stop! That's me.

I believe in Ayurvedic methods, too but my current partner likes what he likes, if you know what I mean, and he does most of the cooking.

Yes, what would we do without the net?