Advise on treating Fibro without medi... - Fibromyalgia Acti...

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Advise on treating Fibro without medication

Mimilondon profile image
21 Replies

Hi there,

I have just been diagnosed with fibromyalgia and I am finding the medication difficult. Does anyone cope with out meditation?

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Mimilondon profile image
Mimilondon
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21 Replies
Deeb1764 profile image
Deeb1764

I have been reading a book that someone recommended on here by Dr Leon Chaitow on kindle 2.99 fibromyalgia and muscle pain. This might help you I have RA as well so need meds but good luck

Mimilondon profile image
Mimilondon in reply to Deeb1764

Thank u I will take a look

in reply to Deeb1764

He has many books on these issues, looks like they are all quite spendy, what title are you reading?

Deeb1764 profile image
Deeb1764 in reply to

I got the amazon kindle one for £2.99 Fibromyalgia and Muscle Pain: Your Self-Treatment Guide (Text Only)

Leon N.D. D.O Chaitow

in reply to

Found it! Fibromyalgia and Muscle Pain, only $10. Thank you

Greyt profile image
Greyt

Thanks for the info . Will look into it.

LoneEra profile image
LoneEra

Hi - it varies from person to person. But there are lots of things you can do to help yourself, without meds:

- Gentle stretching and exercise

- Energy pacing

- TENS machine

- Acupressure mat

- Mindfulness

- CBD oil

It’s also possible to try different meds if the ones you on aren’t working or if you can’t cope with the side effects - so do chat with your GP about options xx

Mimilondon profile image
Mimilondon in reply to LoneEra

Thank you for your supply. The medication is making me feel so sick and too much weight is being put on and to be honest I don’t feel myself on them.

I have been dealing with this for over a year now and I feel maybe can I do this with the advice you just gave as this is what I have been thinking.

Thank u for ur support

saluhouse profile image
saluhouse

Hi Mimilondon. Like you - medication and me do not get on well. So I decided to try to cope without any drugs - apart from the odd paracetamol.

When I had my one consultation with the very expensive fibromyalgia specialist - he suggested Co-enzyme Q10 combined with Vitamin E as a possible treatment. So I have taken them ever since. Plus I now do take 5HTP, a multi vitamin tablet. Magnesium and multi B.

I’m very careful with my diet - try to avoid additives or E numbers. No alcohol and minimum sugar and refined carbohydrates. Loads of salads and vegetables.

Like LoneEra suggests - all those practical aids are useful - and I have tried most of them. The stretching really does help. I do try to keep my social life going (seeing family and friends does help lift your mood).

I have to say doing all the above is expensive and time consuming. I sometimes wish I could just swallow a pill and be done with it. But - in the absence of any alternative - I guess I’ll just keep going with my ‘natural’ self prescribed regime. It has worked to a point - in that I have got a bit better- and I do have a happy life.

Good luck and best wishes. Xxx

Mimilondon profile image
Mimilondon in reply to saluhouse

Thank you so much for this helpful information. I will look into this x

Pte82 profile image
Pte82

Mimilondon, research thiamine and the pros and cons of thiamine forms Benfotiamine, TTFD, Sulbutiamine and thiamine hydrocloride. Thiamine needs adequate magnesium to become bioactive. Check on what foods and drinks negatively impact thiamine. B vitamins work better together so it's important to know about each, their sources and daily limits, Always consult with your health care professionals before using any supplement.

healthrising.org/blog/2013/...

Mimilondon profile image
Mimilondon in reply to Pte82

Thank u

khirani profile image
khirani

Lifestyle changes help a lot; exercise, good diet etc. I have been taking 5-HTP supplements for the past year and they seem to help (I have recently started taking Ashwaghanda tablets too so let's see how they go). I also find that 1 or 2 glasses of red wine every 3 to 4 days helps me alot (I choose a very low-sulphur and sulphite-free red wine). But in the end 250mg to 500mg a day of Neproxen helps the best (I have it with last meal in the evening) without this 'brain fog' sets in and within 2 to 3 days or so of not having naproxen, I have to get myself to the chiropractor for neck/cervical and back adjustments as muscles all tighten up. Deep tissue massages help alot too. Relaxing in the sauna and steam two to three times a week helped alot (not that they are open this past last year or so). I have started cycling past month 3 months and this has helped a lot.

Hayls-b profile image
Hayls-b

Lifestyle changes definitely help but I can’t go without pain killers

Cat00 profile image
Cat00

I rely on exercise and hot water bottles. I try to do some cardio or weight train everyday.

Makie-Uppie profile image
Makie-Uppie

Personally no, if I don't take the tablets I just lie down in the corner. With them I can just about function without bothering anyone else. Sometimes even with the tablets I can go a few days without doing anything or eating.

Elizahl profile image
Elizahl

I have yet to find one that suits me medication I mean so I feel your pain. I have tried yoga and pilates first few classes were ok but became to difficult for me. I have done 6 weeks physio I found that helpful it loosened up the joints so it's not as painful to move my wrists and walking is less stiff. I have started slowly walking daily started by going around the corner then a bigger block and at the minute doing a bit more all within my own community so if I get stuck I can easily get home. I have had 2 days where I did a bit to much so tool the next day off. I found this has helped a bit with my mobility pain is always there but i am carrying on and managing a little easier having gone through that process. I got physio free with arthritis ireland it was online through zoom. I hope this helps. I would try the yoga too it seems to work for many.

Jacjai profile image
Jacjai

Hi.. This is a hard one as so many fibromyalgia sufferers deal with pain differently.

My personal experience before I got diagnosed nearly 2 years ago the pain would interfere with my personal life as in working, raising 2 kids, running the house etc..I was desperate to be pain free, I tried Pregabalin, amitriptyline, codeine, Duloxetine..but after a while they would stop working and the side effects was horrendous..insomnia, restless leg, fatigue, dry eyes, night sweats and the list goes on.

I did try to go medication free but unfortunately I couldn't cope and felt I didn't have a life..when I got diagnosed I was offered tramadol which they worked for me, I had a boost from them I was able to live a normal life..when I was prescribed all the medication above from my GP and all the physio I went to see and mentioned I was on tramadol once a day they were trying their best to get me off the opioid stating it a addictive and dangerous drug to take and would cause lot of problems when I would need to come off them.

I explained from taking pregabalin, Duloxetine, and Amitriptyline (obviously not at the same time, over 2 year trying different medications)they where the worst medication to get addictive to and hellish to come off.

I had to taper off them over 6 weeks and the withdrawal was horrendous, doctor's don't explain this at the time of prescribing the medication.

Since last 6 weeks I'm taking 1 tramadol in the morning and 1 at teatime I don't get any side effects and I feel I have my life back.

My advice is it your own journey and a lonely one unfortunately, but you will have to listen to your own judgement on what's you decide, it your life and whatever works for you, I've stop listening to my doctor now and work out what's best for me.

Tramadol works for me and I'm going to continue as long as I can, I will never go back on antidepressants ever again.

All the best to you for the future..x

LoneEra profile image
LoneEra in reply to Jacjai

I also take Tramadol and find it invaluable. You often get a lot of flack from people - doctors and others - for it. But if it works, it works. I’ve tapered off it entirely before and then gone back on it during a flare up. And I don’t take anywhere near the maximum allowed dose. It enables me to continue working - and that’s priceless in my book xx

Jacjai profile image
Jacjai in reply to LoneEra

I agree with you entirely..if you have tried many different options just to be near normal but suffered more by trying you'll get to the point nothing works. I've come off tramadol when trying different medications and didn't get any withdrawals, like you said doctor's and physio are making out they are the worst drug and highly addictive HELO antidepressants are the highly addictive ones and the withdrawal are hurricanes..side effects are no better, been told numerous times you have to give them time, the side effects will get better🤔by this time after been on them for months and the side effects are no better then is the difficult time when you try to come off them (vicious circles) in my eyes.

No more...not going to try everything else any more, 2 tramadol a day, I'm able to do most things I did before fibromyalgia, I'm happier and getting on with life..and actually looking forward the the future..x

JayCeon profile image
JayCeon

I generally tolerate hardly any meds, altho I did try quite a few.

I'm building up a collection of references and even from my raw overview you can see there's loads apart from meds to try.

A. MIND (pacing, memes, psychotherapy, esp. CBT, relaxation, sleep)

B. PHYSICAL/BODY (Hands, Heat/Cold, Devices, Electricity, Do vs. Get Done...)

C. BIOLOGICAL (Diets, essential oils...)

D. ENVIRONMENTAL (Bed, air, cold, heating, light, noises, wind, sun...)

E. BIOCHEMICAL (Meds, supps, herbs)

Good examples have been given above, esp. from LoneEra & saluhouse.

I use all of the above, except meds. I'm up to about 75+ treatments, but a lot harmed me. Most recent example is the herb ashwagandha, which khirani is trying. It burnt my stomach and gut for 1.5 days - not doing it again. Best 'pill' that's helped is GABA (the original), together with Magnesium & passiflora. First with glutamic acid, but that had adverse effects, so I'm trying to add 5-HTP (once again). I turn over each stone again and agagain. This GABA-combination has improved my symptoms in all 10 major areas, so I'm very pleased. But I'm not gonna be able to manage a normal life, like others have said... but a good one all the same... ! :-) And finding one at last is encouraging me even more to keep lookin...

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