Fibromyalgia Action UK
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Pain or Fatigue ?

Which is more debilitating? Or do they compliment ( 😂 ) each other?

46 Replies
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I find pain leads to fatigue and fatigue leads to pain 🙈

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For me its the fatigue without a doubt. I could learn to manage the pain or just deal with it in some way. Mediation can help with pain relief but what can you do about being so physically and mentally exhausted 24/7? That is the one I can't deal with, which stress me out which aggravates the Fybro which causes more fatigue and life goes on...........

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Yep - this sounds exactly like me too. In middle of a big flare - so sore but the exhaustion and nausea is equally distressing. We can but hope that things will get better for us. X

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Yes the fatigue and nausea are for me the worst. Can’t do anything but lie around. Hate it.

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Agreed. My doctor is very sympathetic with the painkillers, but they don't help the fatigue, brain fog, not to mention the guilt and embarrassment at not being able to go anywhere or do much.

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Hope springs eternal and we are the ones who decide if its going to get better for us. Leaving it up to others is not going to do it. I say we march on Parliament..... :) :)

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Count me in!

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thats presuming we can actually march!!! I will be being pushed in my wheelchair!!

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I find that I can manage the pain better than I can the fatigue. unless the pain is really severe I can usually work through it - but when fatigue hits, it just stops me in my tracks xxx

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Yes - there seems to be no answer to overcoming the fatigue once it comes. Xx

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I find the fatigue hardest to deal with, I can find ways to distract me from the pain & medications that help, but there seems to be no escape from the fatigue.

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I drink red bull for my extreme fatigue and pro plus tablets! Caffeine boost !

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I have two spoons of coffee in my coffee as well as 4 sweetners... ;-p Had not thought of using an energy drink.... I adore the old fashioned original Lucozade... must get a supply and keep them at work in my locker... Thanks... :D

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Do they help?

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Fatigue .. because that’s when I feel the pain more - my body starts to shut down and of course can’t completely

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Like most others, I can deal with the pain element far better than fatigue. I have both fibro and CFS as well as various other medical diagnoses, and I am still in the lucky position of having a part time job at present (maybe not for much longer, as work are taking me down the capability route) - but when the fatigue hits, its like mentally hitting a brick wall, and then my whole body starts to go with it. Everything gets super slowed down. I generally end up having to go home and just go and lie on the bed - whether I sleep or not is irrelevant, I just find I cannot raise myself to do anything more than get up to go to the toilet as the need arises.

It's really difficult isn't it... one leads to the other and then the circle goes round again and again.... On the positive side, most people on my floor at work now have quite a good awareness of what fibro is, and they are really helpful for the most part. I have a set of 'key ring' awareness cards that I can leave beside me on my desk. Each one says what sort of day/hour I am having, and it sort of pre-warns people as to how much I can take on board at individual times.

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It’s so lovely to hear that you have such a supportive and helpful work environment. And what a good idea the awareness cards are! I’m sure those could be of great benefit to many who still have to Work. It is such a vicious cycle of pain and fatigue . The general consensus seems to be that the fatigue is more debilitating. X

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Where did you get the key ring cards from ? Sounds like a great idea

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Like most have said--- I find fatigue more difficult to deal with.

For pain I can try painkillers, CBD oil, heat, meditation/ self hypnosis but when the fatigue hits, nothing helps. It's like a tap has been opened and all my energy drains away. Trying to go on only results in the costochondritis flaring up, quickly followed by head, neck, shoulder, all over pain.

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Is CBD oil legal in the UK? Where do you get it?

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Yes - CBD is legal in Uk. It’s the one without THC ( that’s what gives you a high). I got most of my info from 2 great sites: CBD oil users UK

CBD Users UK

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I use CBD oil. Its really good for pain. I'm reducing my Morphine slowly with it. There are many reputable sites. Simply CBD and CBD brothers and Cheds CBD are good sites IMHO!

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I have Simply green oil 250mg. They recommend this as a starting oil. I got a bad headache ( well I think it was the oil but who knows? ) I took 2 drops each day so going to try again with 1 drop then build up. Fingers crossed! How much do you take and have you built up?

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\\\\\\\\it can give you a headache esp if you take any opiates. Do like you said, 1 drop 3 times a day for a week, then 2 etc and build up until you find what works for you. At present my CBD oil is CBDistillery 500mg in 15 ml. Its 1.3mg per drop. Once its gone I'm going to try Simply CBD, prob the 500 on. I have their Sunset one for bed times.It has added Terpines in and it really helps me sleep much deeper and a bit longer!

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Ah - I take Tramacet twice a day so maybe that’s what exasperated the headache! Thanks for your info. I’m still very fatigued and not quite at my best ( which like us all is not great😂) but will try again in a few days. Think I’ll just try 1 drop once a day for a few days then 2 drops then 3 . I’m obviously going to be a very slow case ! Take care and hope the CBD working for you. 😊

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forgot to say. leave at least 2 hrs between your meds and the cbd drops.

Heres the explanation,https://www.projectcbd.org/science/cannabis-pharmacology/cbd-drug-interactions-role-cytochrome-p450

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cant get a live link. go to projectcbd.org and have a mooch around they explain everything

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Thanks x

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Yes, it's legal. I buy from CBD Brothers. If you go online early enough in the day you'll find samples available. You can order two and pay £5.99 P&P. I'd start with a low one, green or white and order a stronger one like blue.

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Fatigue for me, I can never think straight, constant whirling noises in my head, dizziness, and that all makes the pain worse.

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I find they aggravate each other. Since I was diagnosed with Diabetes last fall in addition to my Sjogrens, I have adjusted my diet, exercised more, and started taking metformin to regulate blood glucose levels. My energy levels are higher and pain/fatigue correspondingly lower. Before that, I was moribund and miserable all the time.

Lately, I have been going through a mild Sjogrens flare, and although the dry mouth and eye symptoms are driving me up a wall, it is a lot more bearable without the pain and fatigue.

The 'exercise' I have taken up amounts to bouncing a basketball on the kitchen floor for 1.5 minutes, three times a day. Working my way up 30s at a time every 10 days!

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Fatigue is so draining . Pain is annoying . But both together 😖

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And they always seem to come together!

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I've also got M.E so the exhaustion is absolutely the worst thing.The days when I cant even sit up and just have to lie in bed and be cared for are awful. Pain is a nuisance at night but during the day I seem to cope with it.

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Fatigue is worse for me. The pain didn’t stop me from working but the fibro fog and fatigue is what got me. I haven’t found anything that made a major difference with the fibro fog and the fatigue. There are pain pills which help ease the pain but nothing to ease the fog or fatigue. 😢

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I totally agree with you. Going to give CBD another go on a very low dose to start off with.

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Did it help with the fatigue?

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I haven’t actually tried it yet. Will keep you posted. Evidently with some people it takes a while to get into your system and you have to experiment to get the right one for you.

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Let me know if it does work for fatigue. I haven’t found anything that works for it yet. 🤗

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The only draw back to that is I will dream about the pain but I don’t remember my dreams like I use to. Last night I had a good dream that I wanted to remember. I thought to myself I want to remember this dream in the morning but when morning came I woke up poof no memory of that or any dreams last night. 🤷🏼‍♀️

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I will do. I have taken one drop for the past few days and intend to try 2 drops tomorrow. Going to take it low and slow! I’m so hoping it helps . I feel it’s my last hope. Xx

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I pray it helps you with your pain and fatigue. We are always looking for that one thing that will make a big difference and bring us relief. I just remembered something that back is in a the later 90’s my doctor 👨🏼‍⚕️at the time prescribed Dexedrine which gave me 65% of my energy back! It was great. Got a lot of painting done in our home at that time. But things happened we moved out of state so new doctor took me off the the Dexedrine and prescribed provigil which didn’t work as well. I don’t understand it. Why do doctors take you off of medications that works. If it ain’t broke don’t fix it. 🤷🏼‍♀️That is always end up breaking or messing it up when they try to fix something that isn’t broke. I have had about 5-6 medications prescribed over the years that worked 100% or close to it that either we moved and that doctor didn’t like that one that worked for me. Loratabs, soma, Dexedrine, protonix,.....🤔.? I know there was more but I don’t remember what the migraine medicine was called and don’t recall the other ones. 🤷🏼‍♀️I just never really understood why.....,🤔! Pharmaceutical company pushing their new medications. Kick backs for the doctors. At least that is what they do in the US. Sorry for the rant. 🤗💕🦋

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I quite agree with everything that you are saying . That’s why I now want to try to take thinks into my own hands. Maybe the CBD will work, maybe it won’t but if it does help then I can take it when and how I want to . Not when some medical expert decides to withdraw a drug that is helping me or try me on one that has horrible side effects . With the CBD it will be entirely in my hands!

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I figure if I'm asleep I don't feel the pain so I give into it. I do feel for those who aren't as lucky as me. I don't have any dependents and my husband is my full time carer. Between the two of us, we don't make much mess but the dogs Little Chi's dig out there toy box every where.

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TBH I don't think I can say one over the other I think both are just as debilitating as each other but in different ways

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Does anyone find that the thought of food makes them so nauseous? Even thinking about cooking a meal makes my stomach clench and make me want to throw up. Is this panic attack, anxiety or something else? I so appreciate all the help and advice that you’re all giving me and I’m sorry to be asking for more. Everything’s churning, I’m so tired and sore. Will this ever let up?

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