I need some advice and would be grateful for any help. I find this difficult to explain so apologies for my poor explanation - I hope it makes sense.
I have always explained my symptoms as having a turning point during the day. Where I go from managing my pain and fatigue to where my symptoms over take my body and I just need my bed.
At this turning point I experience overwhelming exhaustion, cognitive disfuction to the point where I can't read and struggle to find the right words or even thinking is painful. My Muscles also freeze, lock up, spasm .... not sure how to describe it completely all I know is im so weak and all I want is to get into bed with my electric blanket.
Previously these turning points symptoms were mostly in the afternoon only occasionally in the morning however recently they seem to be happening more in the mornings. Which leaves me so depressed and feeling hopeless.
I'm only 36 and I feel like I'm in the last stages of my life. I constantly feel like my life is over. I know this might sound extreme but it's honestly how I feel.
I'm hoping that I'm not alone. Xxx
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Strongshell3
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You're not alone Strongshell3 Most of us have this almost indescribable exhaustion which is made no better by sleep - that's if you can sleep at all. One thing which might work for you is to take your pacing back to small increments, and I mean small. 10 to 15 minutes doing something that just has to be done, then 20 to 30 minutes resting. Take things in small bites: prep your dinner in stages through the afternoon so that the final stages take no more than you are able to do. The same with washing or ironing, and when you are resting listen to music or a relaxation tape, preferably on a Walkman or similar so that you don't have to get up to push buttons on the thing.
Get help, delegate where you can, let friends and family know just what this awful disease entails. Try not to be hurt by dismissive responses from some people. They find it difficult to understand and are fearful that it might come their way too, though they would never admit it. You have to develop a thick skin!
Most of all listen to your body; if you need to sleep, sleep, don't try to overcome it by sheer willpower, that will just exhaust you more.
The turning point comes when you are able to accept that this disease is now part of your life and make the necessary adjustments. You are young and have a better chance of reducing the symptoms of fibro by careful management than us wrinklies Come to this forum often. You will find help and advice, a lot of love and laughter, that best medicine.
Sorry, this seems to have turned into a lecture Love and hugs, Anna xx
Honestly hun you aren't alone! We all feel like this! For me I work full-time and I am always better in the morning but by 3pm I am exhausted and the pain has kicked in! I had it because when I go home I don't have the energy to do anything and then all the housework gets left to Carl. I sometimes try and go home at lunch and get some bits done but it seems I hit a brick wall most days!!
I would really advise that you book an appointment with your GP to discuss your medication etc as it clearly isn't working for you currently xxx
My daughter used to spend most of her time in bed, due to pain and fatigue but since doing the Lightning Process (see copied info from a post a couple of months ago.) she has slowly improved and now has a part time job and is going to do open university. She is 19. I would thoroughly recommend at least getting the book and if you can afford it do the course which is 3 mornings. Best money we ever spent!
Some general tips on pain management
Heat pads
Deep heat
Linnex (available on the internet, only use a tiny amount as its very intense but I find it very good.)
Osteopath, chiropractor or massage
Gentle stretches.
Are you under pain management? What meds are you on? Have you been referred to physio for advice, exercises etc?
This is my old post:
A few weeks ago I posted asking if anyone had heard of the lightening process (LP). I had several replies advising caution. I read some links someone posted which were all very negative and calling it a scam, waste of money etc. However a friend of a friend with ME had done it with great success and my osteopath put me in touch with another ME person who had done it and it had transformed her life. However neither had had Fibromyalgia but the lady advised me to join the LP FB group and ask if there was anyone with fibromyalgia who had done this. I got lots of replies from people who were now living full pain free lives! Clearly you are only going to get people in the group who had success with this but even so I was impressed.
After 3 years of trying to find relief for 19'year old Abby with her having been under pain management for 2 years, spending up to 20 hours a day in bed using heat pads to relieve the pain, my giving her 1.5 to 2 hours massage every night, she was only able to attend school for a couple of hours once or twice a week, had almost no social life and us spending a fortune on food supplements, allergy testing, magnetic mattress, osteopath treatment once a week etc etc we decided to give it a go. There is little we haven't already tried and this was a last resort to find a solution.
So with some nervousness we enrolled my daughter onto the course. Due to her difficulty travelling which would increase her pain we decided to pay extra for one to one to give maximum chance of success. Abby had to do an online training of 4 hours and then a phone assessment to ensure she was fully on board. You have to fully commit to it for it to work.
It works on the principle that brain pathways can be changed. It uses techniques similar to NLP, mindfulness, hypnosis ( but you are not at any time actually hypnotised). In essence it is quite simple to learn the technique but the training covers a lot of theory, much of which is similar to what they teach you in pain management.
The course was 11 hrs in total over 3 consecutive days. I wondered if she would even cope with focusing for 4 hours at a time as after 3 hours of being out of bed she is normally climbing the walls with pain and exhausted.
After day one there was already significant progress. She walked the dog for 15 minutes with no ill effects. She has not walked the dog for about 2 years and walking more than 5 minutes normally causes increased leg pain which can last days or weeks afterwards. She only had a short nap and did some work on her lap top with no,ill effects.
The progress continued after days 2 and 3. She is needing less sleep, is reducing her reliance on heat pads, and we have reduced the length of massage I give her. Now 2 weeks on she is still doing really well. We have just come back from a 3 day theatre fest, travelling to London on the train, seeing 3 shows, doing lots of walking, including spending 3 hrs walking round shops with just a couple of breaks! Today she has had some additional pain in one of her legs, but probably no more than you would expect from having not walked for more than 5 minutes for at least a year!
She is reducing down her medication gradually. She is not pain free yet but we are hopeful that this will happen over time, but even if it doesn't her quality of life is so much better. She can now start to think about her career and is no longer facing a life on benefits.
I cannot tell you what a relief this is for us as a family. If you are able to afford it, I would strongly recommend trying this. No doubt it does not work for everyone and it will not cure structural damage but I still believe it can help with managing pain caused by arthritis etc. if your life is dominated by pain it has to be worth trying. If you cannot afford the course (it is expensive) there are several books available. The one Abby's trainer recommended was "Get the life you love now" by Phil Parker. It is better to do the course, but the book covers everything in the course and is inexpensive.
The process can also be used for depression, anxiety etc.
I would be interested to hear from anyone who does decide to do this and how they get on. Feel free to contact me for more info.
Thank you for your reply to my post and explaining about your daughter. I am glad that she is doing a lot better. I can appreciate how distressing it must have been for you and your family. Your daughter is lucky to have such great support.
I have read a little today on the lightening process. I would be interested to know what, in your opinion is the difference between the lightening process and the pain management course?
I am due to attained the pain management course at UCLH. I have previously put this off because of fatigue and also no time as a mother of 3 boys.
I imagine that each PM course will be a bit different but is likely to use a mix of mindfulness and CBT. I believe the Lightning Process goes further as it aims to reprogram the brain pathways using very specific techniques. As you are booked on the PM course I would suggest attending this first and see if you find it helpful. If not then you could get the book by Phil,Parker and see what you think. If you can afford the course I think that is the best way of doing it but it is expensive!
I wish you all the best! Let me know how you get on.
Honey when your body goes this bad you should go to A&E and be checked out. Dont always assume everything is Fibro related, Ive presented twice in severe pain the last time I was told I have M.E which is an "add on" to fibro, they infused some strong pain relief before they let me go home and advised my physio that I had been there.
I find I need a lie down when I can't hold my self up any more. Sometimes morning, or after lunch or anytime. Ignore it and the pain escalates. Lying propped up on the sofa takes the pressure off and I can relax. Esp back neck and shoulders.
I find you need to be ready for when you are perked up again. Get too cosy and warm and getting up out of your blanket feels too awful. But if you don't, you miss that little window of opportunity to get up and do something and then indeed our lives seem to skip by unlived.
Thanks for the feedback. I'm glad to know I'm not alone.
Appreciate everyone taking the time to reply.
I had a long nap and felt slightly better in the afternoon. I do agree A10 with what you said. I think today was just a bad day and my body needed that rest. Finger crossed tomorrow is a better day.
I haven't tried or heard of the lightening process but I will definitely research it.
I have tried most things for fibro. What I find helpful is regular massages, gentle exercise, stretching morning and evening, hot shower and baths. Finally doing anything that makes me happy and being surrounded with people that understand and accept my condition.
I have trouble pacing myself as I have 3 children. I have been referred to UCLH pain management but unable to attend as yet due to life being too busy with 3 children and fatigue. Although I am hoping to get there during this year. As I really do need help with pacing.
I know I haven't said all I have intended on saying. Exhaustion and fussy brain is kicking in .....
I work full time and by about 3 in the afternoon I have had it! Need to keep going though which can be really difficult. I work away from home a lot so at least I can go to bed by about 6 if I need to.
I find that by Sunday I just need to spend the afternoon in bed sleeping or just resting. It is so difficult with little ones and I am full of admiration for you managing.
I would be lying if I said every day isnt a challenge. Like you I have to keep going regardless! I feel this constant ignoring of my body signals are causing my fibro to get worse. This makes me worry about my future.
I hoping to move closer to my family next yr. I need more support. In the meantime I have to try and pace myself and manage my symptoms the best I can.
I get so frustrated though ... this dreadful condition just puts my life on hold. Well that's how I feel.
I often think about people working full time and wonder how they do that. I should be greatful that I can lay down with my little one during the day.
I'm so sorry. I wish I could help. I've been going thru older posts. Friends do not understand Fibro and how it affects people in different ways. I started feeling it in my 40's but already had depression so thought that was all it was. Daughter gave me an exercise membership and I really tried but fell over the step when doing that and my wrists wouldn't hold me up for floor exercises. After a year I gave up. I'm 73 now and grand daughter has a college degree in fitness and nuitrion but I can't do her class, nor can my Dr....bad feet. Also, I have no desire to go anywhere. A few years ago hubby and I went to a Parkinson's exercise program and I'd just ride the reclining bike, but we don't go anymore due to cost. I hope you find a med that helps....I take an opiod plus anti depressant, and one to help with daytime sleepiness. Funny, I feel the best at 2am so walk my dog then just on my block, but where else to go? Maybe soon they'll have a med that targets the why of fibro. I have heard that low dopamine, like with parkinson's, could be a factor. Don't give up!! Hugs, M.A..
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Come to this forum often. You will find help and advice, a lot of love and laughter, that best medicine.
Love and hugs, Anna xx
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