View Full Version : CFS / Fibromyalgia sufferers???
Hi all,
I have had an initial diagnosis of CFS and/or Fibromyalgia by my GP and am waiting to go to the local hospital to get it confirmed.
I am pretty unwell but managing to carry on working at the moment, although I am heavily restricting other activities in my life. I can't exercise anymore and I don't really have the energy for socialising.
I am very well aware that this condition stops people working often, and that a recommended route to recovery is stopping completely, just giving mind and body total, total rest. I am pretty scared of this as I don't have a support network, or any money, and I really can't see what would happen to me if this happened. Would I end up in a hospital?
I was just wondering how many on here have CFS / Fibro and how many of you have managed to carry on working full or part time?
Also what experiences of treatment you've had or if you've just been left to fend for yourselves with this condition?
Thanks and be well,
Gareth
macc noodle
09-03-11, 12:59
Hi Gareth
Sorry to hear you are not well and have potentially got CFS/Fibromyalgia.
Take good care of yourself and make sure that you ask for all the support you need from your docs and ask them for help in pointing you in the right direction for any additional financial allowances you may be entitled to.
I am afraid I do not have any direct experience to offer you but just wanted to know that I am thinking of you and wishing you well.
:hugs:
Hi Gareth,
I was diagnosed with post viral fatigue last June. There isn't any 'treatment' as such, although some people do try things like accupuncture and other alternative medicines and say they have helped ease the symptoms, but unfortunately there's nothing that will 'cure' you.
Rest, rest and more rest is the most important thing. Your diet will also play a big part in your recovery. Avoid things like coffee, alcohol, fatty foods and try to eat as healthily as possible. I have 2 small children so although I wasn't out at work, I had my hands full at home and I'm not going to lie, I don't know how I got through some days. I read that people who try and carry on as usual when first diagnosed risk pro-longing the illness. If you financially need to keep working then you may find you don't have the energy for anything but going to work. Having said that, I do know some people that have managed to continue working, on reduced hours though.
I'm much, much better than I was 9 months ago but still not 100% better, I think that will take a long time to achieve. I found a website that has a forum with a great bunch of ME sufferers on which has been a lifeline for me throughout the illness http://www.postviralfatigue.me.uk/. If nothing else it's good to know you are not alone.
K xx
Hi Gareth, I've had CFS/ME for more than three years now. When I first developed it, I had a full-time job, ended up having a lot of time off sick and got made redundant. During that time, I pretty much gave up on a social life and tried to concentrate what energy I had on being able to get to work.
I now usually work three days a week, occasionally more. It's a struggle at times but a) I need the money and b) I think it's important for my mental wellbeing.
I also don't think "total rest" is particularly recommended. This, which I've stolen from a DWP document puts it quite well, I think:
"From the physical standpoint, the aim is to find and maintain the right balance between rest and activity (known as pacing). Reduced activity is important in the early phase of the illness and during a relapse. Following this, a baseline of sustainable physical and mental activity should be determined and every effort made to maintain and extend this. Careful pacing with gradually increasing physical and mental activity is the goal. Total rest is counterproductive and leads to a vicious circle of progressive muscle weakness and wasting."
I think help for people with CFS/ME varies a lot around the country. Personally, my GP told me I had it and that was the end of it - no referrals, no support. I now see a naturopath who has put me on mineral therapy, which has helped to a degree. I hope you have better NHS services where you live!
My opinion would be to try to keep working if you can. If you could afford to cut back to working part-time, that might be helpful in that it might mean you had a bit of energy for other things. Best of luck and keep us in touch with how you are doing xxx
Hi all,
I have had an initial diagnosis of CFS and/or Fibromyalgia by my GP and am waiting to go to the local hospital to get it confirmed.
I am pretty unwell but managing to carry on working at the moment, although I am heavily restricting other activities in my life. I can't exercise anymore and I don't really have the energy for socialising.
I am very well aware that this condition stops people working often, and that a recommended route to recovery is stopping completely, just giving mind and body total, total rest. I am pretty scared of this as I don't have a support network, or any money, and I really can't see what would happen to me if this happened. Would I end up in a hospital?
I was just wondering how many on here have CFS / Fibro and how many of you have managed to carry on working full or part time?
Also what experiences of treatment you've had or if you've just been left to fend for yourselves with this condition?
Thanks and be well,
Gareth
Hello there
I am currently suffering with cfs and have had it full on bad for 2 years and 2 months, but my health was gradually declining for around 4 months previous to that, in which time i was attempting to keep on top of the house shopping etc, looking after 2 children going to college 3 days a week while children at school working part time and trying to live a normal family life with my children and husband, until i eventually reached total burnout and couldn't function in a normal capacity at all, i have been virtually bedbound for over 2 years, and considerd disabled. unfortunately there is not a great deal of help avaliable for this conditions, there are clinics, that are their to help you manage the condition and can help you structure your life in a way that you can manage to live as normal and independantly as possible, but these clinics are few and far between.
We decidied to move 100 miles away from our home and where i had grown up all my life as we no longer had family around us there, the doctors and services i had there were pretty rubbish, it was like well you got your diagnosis, now go and suffer as there is nothing we can do. When we moved house i didn't even register with a doctor for the 1st 6 months as i was unable to go the surgery and felt what wa sthe point, however i am glad i did as they have been fantastic, they visit me at home, as do the nurse for my b12 injection and bloods and i see an occupational therpist who comes to my home, so i feel very lucky for the medical support network i have. but others i know with the condition feel totally unsupported by their Gps.
My case of CFS is quite severe and i have it for the 2nd time, but i do know others who have continued to work full time, with more than average sick days, but they do manage as long as they pace themselves, the m.e clinic helps with this.
How long have you been unwell for? have you had tests to rule out other possible conditions.
My husband has had to give up work and he is my full time carer, so we do get financial help, and even tho my illness is on the severe end i did have to fight to get what we were entitled to. Sorry for my long post, was just trying give as much info based on my own experience. but if you have any more questions that i can help you with feel free to ask me
Kate x
Hi Gareth,
I was diagnosed with CFS in 2006. To cut a long story short I did 2 therapies that really helped but basically I have had to change how I think / deal with life because years of being anxious & worrying & having a negative perception of situations just wore me down because my body was constantly trickling adrenaline.
I'm not saying this is how it is for everyone because I think there are lots of different causes but for me changing my life style & how I think have helped tremendously. It's not been easy but 2 years ago I returned to work & I work 3 days a week, I have a good social life & am now trying to exercise again. I don't pace because to me that feels restrictive but I do balance my day by alternating 'wants' & 'needs' which has been really helpful.
So, there is hope. At my worst I could barely move around the house & going to the local shop or picking my son up from school felt overwhelming but not any more. My fear & despair of the symptoms dragged me down but once I changed that things started to improve very quickly.
No help from GP just a diagnosis & a sick note! My GP actually told me that I wouldn't feel better unless I 'stopped mithering'! But you know what? He was right!
Good luck Gareth, try to find the root cause of what made you unwell in the first place & try to do the opposite of that. Do everything you can to alleviate any pressures & worries. There is lots of information out there but you have to find something that resonates with you, people can & do recover from this & get their lives back.
All the best!
Seffie.
Hi Gareth i have just joined and saw your post while browsing through the threads. I was recently diagnosed as having fibromyalgia after health problems which got worse each year. I was only diagnosed after being refered to a rheumatologist last year, he goes through your medical history and various tests so it can take a long time. I joined fm uk and it was a relief to find others with the same weird symptoms as me. I had been out of work for a while but started part time last year. I know many people cant work with it and some become housebound. The symptoms and medical problems vary so much with fm but i agree that they seem to increase over the years. Not all rheumatologist are experienced or sympathetic to fm so it can depend on which one you see as to what treatment you get. CFS and fibromyalgia can be very similar or linked to each other.
I have had it for some 20 years. It is mild enough for me to be able to work. Some situations, such as sitting in a car for 8hrs, cause pain in the legs and hips.
I take amitriptyline nightly 25mg, have been on it the whole time. It is partially helpful, but I am not normal at all times.
If I had a choice, I would take the fibromyalgia over anxiety anytime.
Hi
I was diagnosed with fibro about 2 years ago after a particularly bad flare up and hospital admission.
I was off sick from my full time job for almost a year before desciding to resign. I am lucky that we have a family business and I now work at home when I can.
Fibro tends to come in "flare ups" and I find is brought on by stress and over tiredness - not good if you are an anxious person anyway. The two are quite closely related I feel and if you read some of the posts on this site - it will confirm this for you;
http://www.ukfibromyalgia.com/forums/
My doc wanted me to take Amitriptyline but I decided to manage it just by pain killers when i have the flare ups - this has worked so far.
Good luck
Judi
Hi Gareth,
I was diagnosed with CFS in 2006. To cut a long story short I did 2 therapies that really helped but basically I have had to change how I think / deal with life because years of being anxious & worrying & having a negative perception of situations just wore me down because my body was constantly trickling adrenaline.
I'm not saying this is how it is for everyone because I think there are lots of different causes but for me changing my life style & how I think have helped tremendously.
Hi Seffie,
Thanks for your reply which interests me greatly because I am sure that thinking patterns are the route cause for me here. I've had a few bad things that have happened in my life that gave me negative / fearful thought patterns, and since then stressful situations have been hard to deal with because I see them as very big, scary, threatening situations rather than little blips than can be managed. A few of these stressful situations in recent years have worn me down.
I believe that CFS is caused by wearing the body's nervous system down by constantly perceiving situations as threats. This leads to burnout. And this seems to be where I am right now. I am still working, so I hope that I am addressing this BEFORE it gets to the point of total burnout. But I feel pretty ill, all the time, so I also wonder if it is too late and if I'll need to stop work. The problem is that this (stopping working) is one of those "fearful situations" that I dread and over-catastrophise in my mind.
You mention that you had some therapies that helped? Would love to hear more about those if you don't mind?
Also you mentioned that you have had some success in changing the way you think? I've read books and been to therapists and tried all sorts of things but I don't seem to be able to master this. Any thoughts on how you've managed this would be appreciated as well.
Thanks and be well,
Gareth
Hi Gareth,
glad you found my post helpful! I'm sorry that this is sooooooo long but it's not something I can explain in a couple of sentences!
At my worst I could feel so ill that I found it really hard to accept that this was just caused by chronic stress (or rather my perceptions of stress) & anxiety. My symptoms were mostly extreme muscle fatigue, feeling like my arms & legs had turned to concrete, feeling so exhausted that I felt that I didn't even have the energy to speak & would just have to lie down until some energy returned. It was truly awful & as I said before my fear of the symptoms fuelled & maintained it.
You are spot on in recognising that your fear of stopping working etc is stressing you & then of course this becomes one of those fearful situations that creates adrenaline & makes you feel worse. I went through this too & put myself under so much pressure-that I 'must be well' for work & all it did was drain my energy even more. The things that would exhaust me were pressures, demands & expectations-from others & from myself.
The therapies I used were Reverse Therapy & Lightning Process. Both helped me in looking at how I think / cope with life but from what you've said then I think the LP might be the most appropriate. This is quite expensive & you will find a lot of very negative views about this therapy but it does work for a lot of people & all I can say is that it has helped me very much. It is a little 'happy-clappy' for me but I took the parts of it that resonated with me & have found it does work.
LP also teach you that when you learn to think negatively / fearfully your neural pathways become strong & kind of deeply grooved so that this becomes your brains default pattern of thinking but the brain has something called neuroplasticity which means it can be changed so if you stop the negative thoughts & change them to more positive ways of thinking etc then the old pathways die off & the more positive neural pathways become your default way of thinking so that if you do this consistently & for long enough then it becomes 2nd nature & you don't have to consciously change your thoughts. As I said, not anything new but more powerful than CBT that just tells you to change your thoughts but without the science bit!
In my opinion it isn't anything new, neither is Reverse Therapy. They both seem to take the best bits from therapies such as CBT, NLP & counselling-this is MY view based on MY experience of both-others may disagree.
However, after doing LP I sometimes found it difficult to stay on track & my LP coach told me about a man called David Hamilton-he trained in pharmacology so has a scientific background. He used to do drug research & became fascinated by the placebo effect. He now tours the country giving talks on how the mind can heal the body & how your thoughts affect your physical wellbeing. I have read 2 of his books but the most useful is 'It's the thought that counts'.
I know you said you've read books on this but they haven't helped but I found this book really helpful, you can also watch his talks on Youtube & he has his own website.
You asked how I have managed to change the way I think-well, to be honest, this is still a work in progress & I don't do this as consistently as I should but I think if you really understand how your thinking can have such a negative effect on your body then this is motivation enough & that's where David Hamiltons book comes in. My LP coach had also had very severe ME / CFS & she said that what she found was that she could bring all her symptoms back just by thinking / doing the old bad stuff but by doing the opposite she could make them go again, I have also found this, so that knowledge also helps me to stay on track.
Does this answer your questions? I don't have fibromyalgia & don't really know much about it to be honest but CFS or nervous exhaustion is something that I believe I have had on & off for years from very, very mild symptoms that would appear when I was particularly stressed to the extreme exhaustion that stopped me functioning normally for about 18 months. All I can say is that this approach helped me, it doesn't help everyone but if you believe that your CFS is caused by how you are thinking then I think it's good because you can change your thoughts & this will change your physical well being.
I really hope this helps you & that you find something here that you can use to get well again!
Keep us informed of your progress & as my doctor told me - 'stop mithering!' :yesyes:
All the best,
Seffie.
Hi Seffie,
That's probably the single most useful reply I've ever had - thank you so much for taking the time to write it.
I have heard about both LP and Reverse Therapy in my research into CFS treatments and LP seemed to me to be a scam to be honest, preying on vulnerable people like so many of these "therapies" do. However you seem very genuine, and I do know that my thinking patterns are unhealthy, and I do think that I've reached the stage where I need some help to make me change them. I'm going to seriously consider giving LP a go because I've made myself pretty poorly with the way I am. I'll look into that book you mentioned as well.
Many of the accounts of recovery from CFS seem to focus on "belief" - the belief that you will get better. For me its important to note that this is different to determination. I have been fighting with determination, will, effort, struggle, to get through every day and "beat" what is happening to me. But I haven't been talking to myself with kindness or compassion or belief that I have the innate ability within myself to get better.
Your reply helps me to believe that I do have that within me, and that it is completely possible, so thanks again.
Take care,
Gareth
Hi Gareth,
glad you found it helpful. I understand your concern about LP because I had that too. To be honest I did think that there would be some kind of magical new thing they made you do that made the CFS stuff go away almost instantly but when I learned what you had to do I was kind of 'is that it?!'
For me, it really was just about understanding & accepting how your thoughts & behaviour & even your posture strongly affect your physical energy & wellbeing & then learning to recognise when I was doing the negative stuff & changing to more positive, helpful ways of thinking etc.
So, maybe look in to the LP, ring some of your local practitioners & have a chat with them before you commit yourself. Also, I strongly suggest you read David Hamiltons book first, it's not very long & only about £7 & when I'm struggling I use his book to get me back on track.
I think you're right about 'fighting' to get better not being particularly helpful because forcing & fighting creates tension & makes your body feel like it's under threat which creates adrenaline & so on. Finding a really good counsellor who specialises in either CBT &/or NLP could be just as helpful as LP if you already have an understanding of fight/flight etc.
Anyway, good luck! Believing it is possible to get better is the first step because that gives you hope & this immediately lifts some of the anxiety & tension. If others have done it then why can't you?!
All the best
Seffie.
Hi Gareth
I was diagnosed with fibromyalgia and CFS just over a year ago after suffering on and off for 17 years. I had to take some time off work when I was diagnosed (about 6 weeks) and then went back on a phased return (slowly increasing my hours) I have been back to work full time for 8 months now, and although it is a struggle, I am managing. I also suffer from panic attacks and anxiety, both of which my doctor and consultant believe is due to being poorly for so long and not knowing why. All these things are very closely connected which is unfortunate as they are all horrible on their own!! Although I do struggle at work sometimes and wish I didn't have to be there, I know I do because I need the money!! I just find that I carry on at work and try to relax at weekends (although that doesn't really help with work/life balance!!) but I have to do this as we can't afford for me to go part time. It's the panic and anxiety that is getting to me at the moment!! I would say that if you can afford to go part time then do it (even if it is just for a short while) but if you can't then you need to try and balance the work you do with the rest you have at the weekends. I'm waiting to be referred for hypnosis which I hope is going to work to rein in my anxiety and panic and help me with daily life!! I have found that self hypnosis and relaxation does have a positive effect, have you tried any of these? Sorry to go on, but I do know how you feel!! You will get there, it just takes some time!!
I can't say I ever had CFS but do have fibromyalgia. Never did see any cause and effect relationships with it. Has nothing to do with anxiety and I never have depression.
Hi Seffie,
That's probably the single most useful reply I've ever had - thank you so much for taking the time to write it.
I find that statement incredibly offensive. All these members that have taken the time to post, and you dismiss them with not even a "thank you". Well, sorry that all our posts were of no use.
I've posted on your other thread as I suffer with fibromyalgia and ME. Again, not a dickie bird :lac:
http://www.nomorepanic.co.uk/showthread.php?t=86128
AylesburyCPFM
10-01-13, 18:16
Hi all,
As you can read from my profile, I run a support group for people with Fibro and CFS/ME (and other invisible illnesses) and I am still in the diagnostic phase. So far I have Hypermobility Syndrome and Chronic Pain, but various health professionals have asked why I haven't been diagnosed with Fibro as I seem to follow a classic pattern...
As for the difference between CFS/ME and Fibro, as far as I am aware it's in the 'trigger'. I was told CFS/ME usually gets triggered by a virus, viral infection or something similar, Fibro usually gets triggered by an accident or child birth, so a physical trauma or a psychological traumatic event. Correct me if I'm wrong but that how I was explained the difference and people often get diagnosed with one or the other first, but a lot of us have or end up having both! I don't know if there is a way to test for CFS/ME but for Fibro they have just discounted the only way of diagnosis a few years ago, the pressure point test is no longer carried out as a valid diagnosis tool, so for Fibro diagnosis there now only is ruling out everything else and if nothing fits its Fibro...
Interesting thread.
I am in the same situation in that my GP believes I may have CFS/ME. I am in the process of having lots of tests done just to rule out any other underlying cause for my complete exhaustion. Last lot of results due on Monday.
A friend gave me this link http://www.meassociation.org.uk/ some very good information here too.
Kitti :)
AylesburyCPFM
11-01-13, 03:25
Hi Kitti, yes, the ME Association has good info. Another site that we often refer to is chronicfatigue. about. com (sorry, I've not posted enough to post links yet, so you'll have to take the spaces out... If you paste the following behing this you can find out about the common causes of CFS,
/od/whatcausesfmscfs/a/cfs_causes. htm (remove space before htm)
Here is also info on the Fibro side... /od/whatcausesfmscfs/a/fms_causes. htm
Hope that helps a bit to make it easier to understand and success with your tests!
Nicolette x
Thank you so much Nicolette, that is really useful and helpful information.
I really appreciate your advice and hope you are keeping as well as you can at the moment :hugs: Kitti x
Hello all, first sorry for jumping in on this thread.
My doctor has mentioned to me in passing CFS/Fibromyalgia as I suffer from tiredness through out the day (I sleep semi well) but I will but find as soon as I wake I'm tired out and that all day every day and all so I suffer from costochondritis I have done for 3 years and sometimes I have bad flare ups, I seem to have constant chest ache and should and neck pains.
I tire very easy when walking I end up finding it hard to walk standing straight as it take so much out of me and then my chest will ache and I will start to feel knackered.
I also suffer from anxiety, panic disorder amount other things also gerd and ibs. But this all seems to stem from my very first case of costochondritis which lasted for 6 months.
But I don't know how to take this any further as I don't have a lot of the tender points to get a full answer. My pain is mainly around the chest/shoulders and left arm and also my left knee and ankle.Also I get chronic headaches and left eyelid tires quick an droops.
Doctor has said no stroke or anything like that as I did have a head MRI a year ago but that was due to jaw pain but the doctor said that nothin bad was on the scan .
I'm being treated for nerve pain in the face left side mild Trigeminal neuralgia
But my doctor said it sounds like a cross over of CFS/Fibro
Any ideas as this is taking it toll on me my body and family life I can't stand to be out to long as I just can't do it.
Any advice would be great fully received and again sorry to the op for me butting in on his thread.
Cheers
MidnightCalm
14-01-13, 01:08
Can you all desciribe your syymtoms, like, do you just feel tired and achey and pains or do you get what I get like flu like symptoms and always feeling like I'm coming down with something.
Can you all desciribe your syymtoms, like, do you just feel tired and achey and pains or do you get what I get like flu like symptoms and always feeling like I'm coming down with something.
Hi midnightCalm, If that was aimed towards me.
Then the answer is I get as saoon as I awake I'm yawning sometimes I go sit on the sofa and fall back to sleep again and then through the day I plan on starting something but can only manage maybe a 10 mins and then I feel tired out and have to relax.
I get aches and pain through the day can range from tenderness around the head, sore neck/shoulders, elbow, fingers, knee, ankle and if I'm out walking after 5-10 min it feels like I can't hold my upper bady up anymore I end up walking as if I'm really old for my age (walking upright tires me out).
Also I always seem to have some kind of head cold or chesty cold and headaches of somekind during the day.
Every evening I say to myself this needs doing and that needs doing but I never seem to have the energy to do it no matter what I try.
Powered by vBulletin® Version 4.2.5 Copyright © 2024 vBulletin Solutions Inc. All rights reserved.