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Hi everyone , I hope some of you are having a good day I wish all of us were having a good day . I have chronic fatigue fibromyalgia mastocytosis and two herniated discs in my back and one in my neck. So I've been in pain for long time but I've been managing somewhat but things have recently gotten much worse.I have two small children, & everything started to get physically worse during the last pregnancy. That baby is now two. Recently I had a very bad flareup end this is the first time it's been this bad and this long it started me in the middle of August and it's now middle of October end I feel like I'm getting worse . This is the first time that this is ever happened this way . I've had really bad flareups before which was scary and will send me up in the hospital but I always recuperated . This time I don't seem to be recuperating I seem to be getting worse and my husband is at his wits end because I'm almost bedridden and my two little kids need caring after of course & 'm doing as much as I can but it's a poor job compared to who I was. It's my husband's birthday & he told me he doesn't want to celebrate, because there's nothing to celebrate. He's depressed now too. I remember in the summer feeling good I remember telling myself that I should sort of make a mental picture of that moment because I thought just in case I had a down slide again even though I felt so good and didn't think that it was possible for me to get bad again I thought just in case, I should think about it so that I could remind myself if I get bad, that I've gotten bad before and gotten better again. At this time just seems so different and I've never been in a flare up for this long end I seem to be getting worse not better I hope this does not sound too depressing to some people end if you do feel depressed and don't want to read this you can stop them and please look away I understand . Right now I don't have an optimistic outlook and I'm scared how bad I'm feeling that I'm feeling that the amount of suffering that I'm going through which is endless uninterrupted pain and fatigue end I've screamed out in tears to God to take me away because it's not just me that's suffering. My loved ones, my lovely little ones, they have a shell of a mom, a sad, weak mom, who can barely lift an arm to pass a crayon (I think that's the lactic acid??? Does anyone know that painful extreme exhaustion when lifting an arm, or something ?) I love them so much end there definitely my reason for living but I feel like they're suffering so much because of this illness and my husband is really depressed and he feels he just told me that he feels like I I am a huge burden end he just can't do it anymore don't have the money for a sitter and I don't have disability because I don't think you can get disability here (my father just retired from being a judge in disability & social security, courts & he told me I'd never be able to meet requirements, I've never known why) So financial strain, time constraints, everything building up for him to blow his top, which he did (i dont know about you guys, but I almost always get sicker after a stressor, like a fight. Fight or flight!) I've been trying to keep up with the latest news & hope for all of us, but recently fell behind. Now I feel so exhausted & depressed, I fantasize about, well disappearing. It scares me to feel this close to absolute hopelessness, & I have no one to talk to. My husband is so angry, my friends all moved on, & my family honestly even just today told me it's my choice to not get up & go to family parties -they live an hour away, all live around each other, smart. But even on my best days a party there would be taxing, nowadays, I pay for it for about a week after..So I can't talk to my husband who's about to lose his top, family's out, p-doc is friendly, but I guess I wanted to come here where other people understand truly. I want to go on. I want to get better. I hope I do. I hope you all do too. If you've read any of this, you're pretty amazing, thank you
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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
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
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
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
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
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