I apologise for always seeming to be posting just now. For the past few months I’ve really been struggling with fatigue. I can’t remember the last time that I felt reasonably well. I wake up feeling awful. Get up and dressed and try to have some focus on my limited day. Whatever I am doing, I feel ill. When the doctor asks - how do you feel , I find it difficult to describe. Just generally yuck and tired all the time. What I really want to ask a) is this how others would describe their fatigue ?and b) will it ever pass so that I feel not quite so ill for a while?
I think I just would like some reassurance that I might have some better days again. Thanks for reading this and I hope that all the lovely people
On this site are having as good a spell as possible.
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mcglada0
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Please post as often as you like we are all here to help each other out....
I suffer badly from fatigue and I can go through months of feeling crap and tired and just brushing my hair exhausts me . Totally exhausts .. the pain is horrendous .... before diagnosed with fibro my doctor felt I had chronic fatigue syndrome. But then he said ah part of your fibro ... I won't lie every year for atleast 2-3 months I feel like this ... and every other month I get it or a week or so. The longer periods are a nightmare ... feeling crap for up to 2months at a time... even the shorter periods of time when it loads a week
Or so I struggle with .....
I wish you well and I hope you get more answers from others who will clear anything up ... I'm hoping I'm making sense and that I don't upset you ..
Thank you so much for your reply. No you definitely don’t upset me - it’s lovely to know that there’s people who understand though I am sorry that you have to put up with these horrible symptoms. I can’t decide if I should just give up fir a month or two and do absolutely nothing in the hope that my fatigue will lift a bit or just keep ploughing on feeling rubbish all the time. Wouldn’t it be nice if we had some guidelines how to manage our symptoms? I hope that you are having a slightly better period and I really appreciate your support. Audrey xx
Hi, I feel exactly the same with fatigue. I have just got in bed and I'm so pleased to be here. I don't have any energy at all. I go through the day trying to do small tasks but they tire me out. I might seem lazy to others but I don't care. I think it lifts a little when the weather gets warmer but then it gets too warm and I get tired again. I have vitamin B12 deficiency which doesn't help. I'm having an injection tomorrow so I might feel better for a few days. This fibro is horrible and you aren't alone. If you find any help let me know please.
ThanKs David for Replying especially when you are feeling so fatigued yourself. Do you feel generally very unwell along with the exhaustion? I suspect that you do. As you say, it’s a horrible illness and thank goodness we all have this support group to help us cope. Ai can promise that if I ever find anything to help, all the lovely people here will be the first to know. I hope that you are comfortable in bed now and tomorrow is a bit better for you. We all need hope! Best Wishes . Audrey xx
Hope it's ok another cut and paste msg but saves me typing too much.
So sorry you are struggling. Sometimes you have to be kind to yourself and take time out to rest.
I am beginning to realise I have to look at my body as a machine. The way I would look at a car...check I have put the right fuel in perhaps diesel not petrol, make sure I have enough oil and water and the right pressure in the tyres, oh yes not to have it overloaded with weight so that the car can perform to maximum capacity.
Likewise with my body to put the right vitamins, minerals, nutrients and water. To operate in a calm stress free environment - learn to breathe correctly and to know my limits so not to keep getting burnt out. To take advantage of daylight and sunshine to boost vitamin D and Serotonin! Also to keep myself in check what comes out of my mouth /thinking pattern as in to find positive talk so that I can be an encouragement to myself. I have caught myself saying today "on a positive note - moving forward".
Science!!! Watched a programme moons ago saying that scientists have discovered we have a voice activated gland in our brain. So if you kept saying "I'm tired so tired (yawn) you talk your self into dropping off to sleep! The only one listening to what your are saying - is you!! So we /I need to be mindful whst I am saying to help me get through the day the best as I can on a positive step.
Years ago I trained in stress management and I never forget the teacher telling us that when we smile (of course our lips and face move) the smiling action massages the glands just under our ear lobes and the gland sends chemicals (endorphins) to our brain to say you feel good. So I would go round the house with this deliberate smile on my face to activate my endorphins to send messages to my brain to say I feel good! Crazy thing was we always had a good laugh about it!! When we struggle with fatigue and pain the last thing we want to do is smile!! But it is the medicine that we need!!
When we are stressed we operate fight or flight! Any tension in our body we think we are under attack! So learn to do a body scan and look for tension in your body and shrug it out. Do self talking "I am ok. All is well". Google "Diaphram breaking". That's helpful too!
Also when you do all you can do to help yourself - give it time to kick in - and have confidence that your pain will settle down and you will start to feel much better.
When you feel so fatigued and in pain the last thing you want to do is feed yourself well but it is your road to recovery to get essential nutrients into your body to help your muscles and brain to function. I have started shopping on line to make sure I get enough fresh fruit and vegetables. Get some decent ready made soups as standy to save you cooking time and avoid too much sugar in your diet. Your energy levels will pick up - remember your body is like a machine and it needs the right care. Hope this helps.
I think I've been doing the same. I must be annoying people with my constant benefits problems! It's so reassuring to get replies on here though. It helps me realise I'm not alone.
Hope it's ok but I have copied my recent response and wanted to share info with you to in the hope it will help/encourage you to
Hang in there hun as flare ups are temporary but whilst going through it seems forever but it is not! You have good and bad days/weeks and hopefully days/weeks where you are managing the Fibromyalgia.
I can only talk about my experience as everyone is different. If I have stress then Fibromyalgia goes through the roof!!! Life is stressful/ work is stressful/coping with Fibromyalgia is stressful so I am trying to minimise stress by putting my health first hence I have been off work nearly 4 months - minimising some stress!
Whilst off I have had counselling along with using breathing techniques to help me calm down. I have taken Epsom magnesium warm baths and used various aromatherapy oils on areas of muscle that are painful. I research alot about Fibromyalgia and I have improved my diet alot by trying to eat more fruit and vegetables. I am also taking 5HTP (Holland & Barret £15) to boost Serotonin to block "P" substance in spinal fluid - which helps to lower pain threshold and 5HTP also boosts melatonin. I have taken this for several months and I am just starting to "dream" deep REM sleep a state where our bodies repair and produce necessary chemicals in our body such as Serotonin which helps us with stress and other functions too! I am not so emotional now thankfully! I had not slept for so long I think my body's chemicals were on burn out and that's exactly how I felt "burnt out". I also take A-Z Boots/calcium & D3/Magnesium & B6 / vitamin B12 /Spirulina/Omega oils 3,6,9.
I do forget to take the vitamins!!! Fibro fog does that!! I still struggle with pain and fatigue but by trying to take control to help myself I do feel a little better. Of course there are the armytriptilin and codeine meds to hand if needed but I find they numb my brain but not the pain. Feeling hung over and constipated with these drugs is not pleasant!!
I am finding walking painful these days as my ligaments in my legs snap and crack! However I do sit out in the garden whenever it is sunny and I invite neighbours or anyone willing to pop in for a cuppa as it is not good being isolated! I do my best to keep in touch with family and friends by phone or text.
I have deen disgnosed since 2003 with Fibromyalgia and had it years before but doctors just could work out why I had so
much pain and exhaustion all the time!
Crazy thing is I have always tried to beat this condition and always pushed myself to the limit to keep going!! Only recently have I given myself permission to accept that I have this condition and it is "OK" to take time out for myself to "recover/recharge" from a flare up!
So my fibro friend try and be kind to yourself, take time to recover and put your health first above all things by avoiding stressful situations, good healthy diet, plenty of water, avoid sugar-sweetners and try and get outdoors once a day for fresh air/natural daylight/sunlight. I am giving all this a shot as like you I want my life to improve and I want to look forward to be able to do things and enjoy my life!!
Hope you feel better soon. Also check out a book "Beating and Treating Fibromyalgia and Chronic Fatigue Syndrome by Dr R Murphrey £18 approx Amazon.
Thank you do much for your amazing positive text. You have given me so many tips to try and improve my condition . Everything you have said makes so much sense and all worth a try. I really appreciate you taking time to respond with such a helpful, detailed text. I hope that you are now having a much better spell and you manage to keep it going if/ when you return to work. Xx
Hi again, hope it's ok as I have cut and paste another response as it is too much to type again. The reason I say cut out too much sugar is because Serotonin (happy drug) is also used up signalling insulin to get rid of sugar from your blood so if you don't sleep and not producing enough Serotonin you will feel quite low in mood! Which is why we probably eat loads more sugar stuff to feel good because Serotonin usually kicks in but we're running out of Serotonin because of lack of sleep. So previous response to someone...
Dr Murphree book Treating and Beating Fibromyalgia and Chronic Fatigue Syndrome" has several pages of questionnaires to establish which chemicals you might be deficient in. I ticked 3/4 questions on each page where he says dont panic start with 5HTP to boost serotonin n melatonin. I did not use the dose he suggested as naturally unsure of it all. I think I started on 50 mg for a few days and I am not joking when I tell you my brain was "firing". Have you ever seen a scan of a Fibromyalgia brain. Lit up all over the place!! It was as if my brain felt like a sponge and I was coming home lunchtimes almost desperate for more of the 5HTP. So I took 50mg lunch time on two occassions.
I then increased it to 100mg half hr before bed. I can say say within a few weeks I was feeling calmer!! I was an emotional wreck, crying for no reason, felt burnt out, no energy to lift my arms or to stay awake - it felt like game over for me! I have run out and got more a week or two later - natural product so no side effect. Specific pain in my elbow soon disappeared!! Although I have stiffness and cracking in the morning and general aches and pains I feel more in control!! I still have fatigue and random pain through my body for no reason e.g trying to type my hands burning and tingling!!! So will have to stop typing soon.
Did I mention about the blue light thats omitted from tv phones laptops - stops melatonin production so switch everything off early!!
I am several months in and perhaps 5HTP has started to help me sleep deep sleep REM where I can start to produce my well needed chemicals including Serotonin. Stress needed sorting along with healthy eating - I read about chemicals needed in brain Noraphenine which you get through earing vitamins minerals amino acids and Omega 3,,9. Serotonin you gain partly through sleep (produced in gut so if u have IBS/leaky gut need to destress - look at diet too. Then Dopermine - you can get through exercise!!
All above a challenge if a Fibromyalgia sufferer!!! But you have to start somewhere and for it was my sleep and boosting vitamins etc.
Please note I am not a doctor and the above info is my interpretation and understanding that helps me. Everyone will be different xx
Hope some of this helps you. Let me know how you get on. Take care 💕🌈
Your texts are really helping as they are giving me something positive to focus on. I have taken a note of 5HTP and definitely going to order it. Does it kick in fast or will it take time.? The start of your third paragraph is definitely me at the moment but you have given me something to work on so a big thank you. And I really hope that you are keeping reasonably well at the moment. Xx
Hija. Glad the info is helping. Certainly get Dr Murphree book off Amazon. There are so many testimonies of people who had no hope and then with his help their symptoms improved! It is the first book that ever offered hope.
You could watch Dr Peter Glidden - Fibromyalgia on youtube. He is a nauturopathic doctor and he is sooo angry at the pharmaceutical companies making greedy profit making people more sick because of side effects!! Be warned though he is dead straight with his talking and he does not mince his words!! He is blunt! He tells you 12 bad foods not to eat and he also talks about Dr Wallach.
Dr Wallach was a vet and he cured "white muscle disease". Animals born and had no strength in their muscles to walk. He used Selenium on the animals and they got up and walked!!! These doctors believe "white muscle disease" is the equivalent to "Fibromyalgia " in humans!!! A deficiency in the minerals in the ground so essential nutirents not getting into the food chain causing this condition. So I do also sometimes take additional Selenium but it is in the Boots A-Z.
I have also just bought a book called the Hay Diet where doctors believe we should not mix carbohydrates with proteins. My friend suffered MS many years ago and someone gave her the same book and never looked back as it also helps with various diseases that cause pain. So I am reading through it in the hope to make more improvements.
Be careful when ordering 5HTP as my friend ordered and tablets came in 200 mg capsules whereas I only started on 50mg and worked up.
Everyone is different and will be at different stages of depletion of chemicals in their body so there is no saying how anyone will be affected. The book will explain everything so best to read up on chapter 10.
You can check out Dr Murphree on facebook as he does webinars.
I told my doctor anout 5HTP but she wants me on anti depressants. It is always worth speaking with your doctor especially if you are already taking other medication.
Hiya, I'm totally the same, I feel ill all the time, I'm constantly in chronic pain with my fibro, I'm exhausted daily fibro fog is just a nightmare, can't concentrate on anything, been trying different remedies but to no avail, just getting out of bed in the morning is a task, I just wish I could get some ease once in a while but no, so if anybody has any ideas please let me know, hope you feel better soon and have a good day,.
Hi. I do hope 60Chrissy’s text gives you some ideas on how to improve your fibro. We’re obviously all struggling and it’s great to read such a positive helpful text. I do think that the stress brought in by this horrible condition leads to lots of additional physical factors such as nausea and fatigue. How do we remain stress free? Easier said than done and I’m at the stage where I feel I might need a CBT but whether that’s possible on the NHS is another matter. I do hope that you begin to feel a lot better soon. Thinking about you. Xx
I really feel for you. Fibro really sucks the life out of us if we let it. I hope 60Chrissie’s detailed positive text will help you too. We’ve got to try everything. Stuck in there and I hope that you too feel better soon. Xx
I feel tired all the time. I try to keep going using taxis to go to the theatre which I love. I am lucky i live in Edinburgh and there are wonderful tbeatres. I sometimes for what the point of getting out of bed but I do! Try and keep going and good luck!
Thank you and you too. I also live in Edinburgh! I think we all have that inner strength, buried deep - that we want to keep going. Lots of good wishes to you. Xx
That's just how I feel. Sometimes worse than others and feel so guilty about it. I take multiple meds. for Fibro., late onset diabetes, blood pressure, pain, sleep, and daytime sleepiness which sometimes works. When I take a shower my kneecaps start shaking. I even find that brushing my teeth is daunting. Carrying on a conversation is exhausting even with family. Keeping up with BD gifts and Chr. is a chore and shouldn't be. Sometimes I have a good day and I'll agree to things and pray I'll be able to do it. I pretend a lot but really just want to sleep. I'll blame it on being close to 74. Heaven forbid to admit feeling sick all the time. The med. Provigil helps for a couple of hours. I take the generic and frankly I wonder sometimes if it, or my pain pills are placebos. My Dr. discovered I have Epstein Barr virus which causes fatigue if it's active like mine is but the only way to make it go dormant is rest and avoid stress. My hours are scewed up so don't get to sleep until 3am....then get up from 10-12. Hubby has Parkinson's and he falls asleep quickly around 10 then awakens several times tho usually up by 7. He gets some things done but by afternoon he naps...it's his med. that causes it tho. I do get some shopping done if I force myself as well as with cooking. He cleans up after. We share laundry. Housework really suffers. How do people do it? And have to go to work! We had a busy life raising 7 kids, taking care of grandkids, hubby working 3 jobs at times. Them wham, no real retirement fun for either of us. It is what it is. g nite all. Sweet dreams.
You are having such a hard time! Please font be too down on yourself. It sounds to me that you do amazingly well with such a lot of medical issues going on. I feel the same as you about retirement. It would have been lovely to have no health issues and enjoy the grandkids and time to ourselves but as you say it is what it is. I suppose we’re lucky to have hubbies who care and help out and kids and grandkids who love us despite our limitations. However, I do feel sad and guilty that I can’t be the mum, wife and granny that I would like to be. Look after yourself and be kind to yourself😊. You deserve it! Xx
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