Scared at how bad I am feeling desperate and hopeless

Ignore your father and make a claim, go back to the GP better still get GP to visit you.

Yes I know that extreme exhaustion when lifting an arm is like asking my body to climb Mount Everest.......

It will get better....dont know when or how but it will........do not lose hope...

Do not lose hope...hang onto it...even if its so small you cant see it...which you cant at the moment but keep a place in your heart for it because it will grow.

You've been up...you've been down and you will get up again.....

You are amazing.....you came on here and share your pain....take away some hope...can't give you practical help but take some hope...keep it close and it will grow.....xx

 

i am to tired and sore to reply but i have read this and you have my support, i agree with jcnps...

What  a shame you cant rely on family when needed for you and your children, they could be such a help for you and your kids, practically and emotionally,  even if just temporary. till you improve a bit, Agree you need to see gp and better to call them out, l know its got more difficult to get benafits, but you should meet criteria, maybe for a carers allowance also.  l know some who get both and quite fit and active, but mental health or drug problems, seems to take priority. But you need help to cope with all, l guess your husband is frustrated and worried, some men struggle to deal with it, if there,s any support group in your area maybe they can help, just copy your post and let them read it. .  Dont give up hope, things can improve, keep battling for your own and kids sake, best wishes. 

Hi Clem,you now have me to talk too :-) I'm Lisa 32 from uk and I know how you feel,I have been bed ridden for most of 6 weeks with severe dizziness and not found out what's the matter yet as having tests,I sometimes feel like I'm fading away/close ti death and I have two girls aged 13 and 3,I feel a rubbish mum as I can't do hardly anything with them,I'm lucky as my mum helps out but she's disabled so can't do too much,my boyfriend works 6 days a week long hours so I feel useless as I'm off work sick still,work are OK luckily but I just want to be normal like in the summer going out on holiday,theme parks,I'm depressed as I just want to be a mum. tell your kids you love them,hold them and try be strong and smile and laugh with them,that's the best gift you can give,just letting them know mummy loves them.my boyfriend support s me but I know he's fed up I'm a burden really,I hope your OK,Lisa x

Hi I sent you a lovely friendly message but says it has to be checked? Not sure why but hope you get it,Lisa x

Hey!! I was diagnosed with Chronic Fatigue Syndrome a couple of weeks ago. The last two weeks have been quite possibly the worst in my life!! Coming to terms with the diagnosis was shocking and confusing especially as the doctors do very little to give you any information. I decided to do a lot of reserch for myself and coming on this site has helped as everyone is very friendly, supportive and informative. Since my diagnosis I have had to quit work, college and the gym and have completely relaxed my whole lifestyle. I have taken up yoga twice a week and try to meditate when I can-I can honestly say I am feeling the benefits!! When I first started yoga I felt like I had lost all my muscles (like I had none in my body) and strength but slowly I can feel it all coming back

Over the weekend I actually felt suicidal with how bad I was feeling; nobody around me bothers to ask if I'm ok or need help, nobody asks what is actually wrong and people actually look at me as if I'm making this Illness up!! On Monday I decided enough is enough!! I snapped out of my self Pitty state and took on a more positive approach to this horrible illness!! I have no one around me for help & support (I also have 2 children) so instead of sitting in tears in bed I decided to come to terms with it. I've had two good days so far this week and I hope tomorrow will be a good day too. I've been able to get lots sorted in the day but also know when it's time to sit down or go to bed for an hour. You need to understand your body, recognise signs and listen to your body. I know that I will have more episodes of fatigue and it scares me a lot so I'm really trying to enjoy my good days to make up for the bad. Fingers crossed that we all get better some day but in the mean time all we can do is try and stay positive 😊

I have had to claim Employment Support Allowence and I have also put in for a claim with DLA which you are entitled to. What we have is classed as a disability-my solicitor told me this yesterday!! If you rent your property then you will be entitled to help with your rent and council tax.

Lots of love to everyone going through this ❤️ Xx

Hi Clem.  my heart goes out  to you. feeling the way you do, without support and looking after  your little ones, i  consider you're  being incredibly brave & selfless. in fact, i was feeling sorry for  myself until i read your post. it certainly put my pain in perspective. 

hang in there Clem.  this flare up will pass like the others did.  it's just taking longer than the last one.  the stress of struggling on your own isn't helping. sometimes  the more we struggle the worse the symptoms & payback become.

you are young Clem, so the chances of recovery are much greater, if you manage it optimally. look to the future and try to visualize yourself in good health, playing with the little ones.  if you can allow yourself to relax it'll help  lessen the pain and aid recuperation.  i know, it's easier said than done, but effective when we can do it. have you tried Amitriptyline for the Fibro. pain.  apparently it helps some ppl. 

i'm wondering if there's any support groups in your area. if you're in the UK, there are ME/CFS/Fibro clinics throughout the country.  have a look @ the ''Action For Me'' website.  they list Clinics & support groups.

in respect of disability, you most certainly would qualify.  you must get your Doctor to support you in applying for this. it will help make life more bearable.  you maybe able to afford a 'sitter' for a few hours a day or for someone  to help with the food, house chores  etc. you have nothing to loose by applying.

i think, most ppl  on here  will understand how you feel: the relentless exhaustion the weakness, the helplessness &  frustration this unforgiving illness engenders. it's normal to have  pessimistic thoughts, but best not to allow them to dwell too long.  just acknowledge them &  focus on something more positive. we are with you in your pain, so hang on in there Clem, it will change. nothing ever stays the same. 

healing thoughts going your way

C.

Hi Clem;  I have read others' replies, and they have all given you the emotional support that you need, at this time............and as they say, "Do Not give up", as you do have good times, and your little ones need you....they would prefer to have you, than not..............

​I am wondering what medical help you are getting? and what other help in the way of Natural Therapies?.............as one contributor mentioned, are you taking  Amitriptylline....this is Very helpful for me.....I take 25 mgms at night....it is a very good pain relief and has some light anti-depressant with it for the emotional state...(Cymbalta is another med in this line and may help you??)......my other meds include Gabapentin, which is Nerve Blocker, and although some say it hasn't helped them, it is very helpful to me.........as for Natural Therapy, Physio/massages are invaluable (even one a month) to relieve the Stiff, tensed up muscles.....many of us also take vitamin supplements, such as Magnesium (take as per label), and Vit B12, Vitamin D and I also am trialling Melatonin  to help me with the REM stage of sleep (for some reason the researchers have found that we are misssing this hormone which is usually produced in the Brain in healthy people....and is Essential for all to get Refreshing sleep....to wake up feeling refreshed.)....and I find that so far this is helping me.....the magnesium helps the Cellular Activity, from which our muscles suffer (you mentioned the Lactic Acid....this is where the magnesium comes in)......also if your bloods show lack of iron/anaemia, some ferotin/iron may be a good supplement, too; as this carries our oxygen to these cells..............very importantly, do/have you consulted a Rhuematologist?   These specialists are very important to us, as this is their speciality and will give you and your GP a Care Plan of what meds/treatments you need......hoping that this helps, as well others support, knowing that we all are here, and are available for you/others to talk to and know that we understand....even if we can't work miracles re others in family Not understanding, as this is something we all find to be a problem (as they say, we Look Fine).........but know that we know and care.......I feel that you will get off this flare, and be able to enjoy your family again....but you must Look after you, too...........sending you thoughts and a gentle hug (as we all do need a hug, even if it doesn't touch us physically, but in mind).............​Bron

I'd agree with Bronwyn on the Amitriptyline, I am quite new to it, as I had a bad experience with another antidepressant a few years ago, but looking back I would say I was put on the wrong one and probably had my dosage upped too quickly. 

Earlier this year I saw a Rheumatologist as I was in so much pain so often, he seemed extremely suprised that I didn't have any real sleep or pain management plan via my GP.   

My GP had prescribed sleeping tablets and painkillers but was so reluctant for me to have that that I had to promise I would only take them when I was really desperate.  So I was harldy ever getting a decent nights sleep.

The rheumy I spoke to seemed to think that this was an overboard attitude, and encouraged me to take them a bit more (not all the  time but just during my worst times) and it definitely helped but obviously isn't a great longterm option.

I decided to give Amitriptyline a go. It knocked me for six at first and after about 4 days had to stop taking it for a few days as (I felt like i was going backwards) but I did find when I tried it the second time it didn't effect me quite so badly, I'm glad I perservered, I started out cutting the 10mg tablets in half and I am now up to 20mg.  I've yet to see how they work in the longterm, but its definitely an improvement.

If you do try them I would advise taking them at least a couple of hours before you go to bed.  Just like the illness itself, they make it hard to get going in the mornings but I do find the hours that I do have energy I feel more myself and whilst I still tire easily I get more done in my up time, I feel more like automatically getting on with things rather than forcing myself because I know I have to.  

A perfect example is today, as I helped my cousin for a couple of hours yesterday moving flats, this would have normally floored me for at least a few days, but today i'm on here talking, and although I didnt really get going until about 10am i've already walked my dogs and looking forward to preparing dinner early to get it out the way.  Normally I would be putting it off as long as possible until I had to do it and then have to force myself through it. 

Although, particularly with you having children to care for, your family will have to realise, if you are going to try this medication, you need their full support, as they could make you feel worse for the first week or two (if thats possible!) as they do have a drowsy effect which does seem to lessen with time.  

It's far from a cure so they also have to realise this is an aid to helping you, it's not going to magically fix you. 

I am in agreeance with the others also to ignore you fathers advice.  Our parents have a tendency to view us differently to outsiders. Not sure of the right word to use here, but his - lets say "skewed" - view of you comes from probably being too close to the situation.  He may be an expert on paper in procedure but think he needs to take a back step on this and let you make your own way.  Afterall, its like they say "if you don't ask you don't get", you may as well at least try. 

As for progress, I couldn't go into indepth detail but I can assure you there is progress being made and since about October 2014 researchers have proven this is a real illness and patients deserve far more than they are getting.  

CBT may help you deal with emotions about having the illness if you think that is something you need help with, but again it is not a fix, it's just another tool that some find helpful, its not something I have tried so can't speak from experience.  

Exercise therapy seems to finally be getting the slating it truly deserves, don't get me wrong exercise therapy i'm sure has its place in recovery and for lots of illnesses not just this one, but thats the point "recovery".  Most of us aren't recovering, we are still ill.  Resting when you need to (or just before you know you are going to need to) is one of the most important things.  I think as usual the media have played their wicked part in trying to make us look like we are just not trying hard enough - shame on them!  

If your family do a bit of research (ignoring the trash media and anything prior Oct 2014) they may well find they actually start to feel for your situation a bit more.  I fully appreciate this has a massive effect on your partner and the way he saw himself living life, but does he really think this is how you wanted to live yours?  You have all the same feelings of loss as him but with the added bonus of painful unbearable symptoms on top.  I do feel for him and your children, but I feel for you much more 

There are other areas of research going on, i.e. the genome project, reducing leptin levels, the possibility of lymes disease and other associated infections not being tested appropriately, just to name a few, so there is still hope and there are more people than ever taking this seriously.

We're not lazy and we're not going away