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i feel so alone
26 Replies
joebenbeth - January 31

i'm new to all this and i feel i just need friends who understand exactly what and how i feel.
my case started just over 3 years ago with a really spliting headache then followed by the server pains in the chest and burning of the face and a whole load of other things, it took 2 years to finally diagones me with fm and i was put on amytripsolyn (think thats how you spell it my spelling and general knoledge seems to have taken a battering) i'm currently taking 60mg aq night and i'm sad to say it doesn't seem to work when its ment to but boy am i even more shattered the next day i've tried takeing it at different times to see if it will kick at a better time so as to help.
i have also been diagnosed with an iron deficiency which really don't help the problem, and i find that no one seems to understand just how i feel (i think they think i'm making it all up).
i had a patellaectomy (removal of the kneecap) 10 years ago so i'm not that stable on my legs and on really bad days i always seem to fall and end up A&E which means even more hospital appointments i currently live in a two bed house and is trying to gain a medical priorty to get a 3 bed as i have 3 children 2 boys (16 & 13) and a 5 yr old girl who has to share a room with me and she don't sleep all night as she seems to have sleep problems as well but my council have refused my condition saying where i live don't affect my life or medical condition please can anyone tell me i'm not over reacting in saying that if i had an extra room for her it would possibly help me obtain a less disturbed sleep as she disturbs me and i disturb her and it's getting to the point that i'm so stressed and starting to feel depressed as no seems to want to give the help i'm asking for it's also playing havack with family life which at the moment i just feel like walking and not coming back the only thing that is keeping slightly together is i can't let chilgren down they need me but i'm in no fit state to be as much as i shold and it hurts (not physically but mentally)i just feel i'm fighting this thing on my own.
i'd better leave it there as i've rambeled on to much that i'll end up boring you all it's just nice to know there is somewhere i can put this all down and hope to get help


biggbrowneyes - January 31

HI! My name is Stacey, and your not boring me at all! I'm actually new on here too, have been fighting this for 7 yrs now. I know exactly how you feel. I have NO ONE for support. I'm a single mom trying to pay all the bills alone, feel like crap 24/7 & some days I wake up just wanting to go back to sleep! It sucks! I literally have no family except for 1 grandmother, who doesn't understand either& my 2 children 15 & 22. My son doesn't live with me. just my daughter, whos a typical teen on the go, & doesn't understand either, which is understandable to a point, I just wish I had someone that understood.I never talk or see any of my friends anymore. I lost my mom last Sept at 63 yrs old, & that has torn me up, but thats another story of its own, I go nowhere and do nothing, unless its for my daughter. I use to never cry about anything, now thats all I do!
I have had to educate myself over the years on the internet because dr's around where I live are worthless, the ones I've come across so far anyways! I'm so tired of going from dr to dr & noone understands.
My house is a mess, because I've gotten so I just don't care, and its just not me~ I use to be on the go nonstop, was training to be paramedic, and that dream is gone! Winter time is killing me.I had a hysterectomy 8 yrs ago & its been downhill ever since! I have hypothyroidism, hypoglycemia(low sugar), intersistitial cystitis(severe bladder pain), & of course FMS. Theres not too many symptons of it I don't have! My daughter graduates in 3 more years & wants to go to Florida for college & I can't wait! because I'm going too! I can't deal with the cold anymore!
I spend all my time worrying about money & paying the bills. I just live day by day, I would give ANYTHING for this to go away! I wouldn't wish it on my worst enemy! so believe me, your not alone! if you need to vent, go for it!! you have someone that understands EXACTLY what your going through!!, which I'm sure everyone else on here agrees with me too!! :)


toots2889 - January 31

joebenbeth, you are definitely not alone! I to am a single mom, my boys are 17 & 11. Its hard to deal with everything being a single parent the way it is, so having fibro along with it is really over whelming! One thing i can tell you to do, is make time for yourself. You need to do something you enjoy doing, and do it. Otherwise, you will loose yourself and having something to look forward to helps. What meds are you on? If the sleep med(i think is amitryptalene) isnt working than you need to ask your dr. to up the dosage. I do agree that it would be benifical to have your daughter in her own room. Would it help if your dr. wrote something stating such? I would check into that, if you havent already. All of us for the most part struggle with people not understanding our condition, so know that your not alone. We are here for you anytime you need to talk or vent. I hope i was of some help, and keep posting and let us know how your doing! Take care!


kvc33 - February 1

HI, Since it's unlikely that you will be given a bigger home, I think it would make sense for you to sort out what is causing your daughter's sleeplessness. Since she is used to sleeping in the same room as you, putting her in a new room would probably make things worse, at least temporarily. Is she worrying, getting up to go to the bathroom? Does she have trouble getting to sleep or staying asleep? How about you? Think carefully about it. I had to do that last year. I realized that although pain and worry sometimes kept me awake, it was usually because I was overtired that I couldn't sleep. I learned to lie in bed for a few hours before expecting myself to go to sleep so I was in bed around 8:30. I'm assuming you have seperate beds? Take control of this situation instead of hoping that it will change.


pixelmation - February 1

Magnesium for your daughter should help her sleep. I know it is VERY hard as I had a horrid divorce, worked 2 hours away and long hours on my feet selling cars, raising 3 kids on my own cuz ex went to jail so no money there nor help with the youngest who at the time was 4 and slept with me. TV works wonders when your child refuses or can not go to sleep so you can sleep, it will take some getting use to but it helps, as well as the magnesium.

Also went through PTSD from all of that and wish I would have sought counseling back then as I feel it would have helped me cope better with the shock of my life.

I could go on and on but I better can email me anytime tho if you just need someone to vent to or chat with pixelmation at gmail dot com.


joebenbeth - February 1

hi stacey i'm so sorry to hear about your loss and i thought i had it bad i'm not a single mum but my husband just doesn't understand so i feel i might as well be. i wish yourself and daughter luck in the future not to long till you'll be in the sun and you can put all that horrid cold weather behind you i don't really have the option as i'm in england and it never seems to be warm here i have so many things i enjoy doing like drawing, card making, cross stitch, crocheting and cake decorating as you can see i love craft projects but my lack of concentration means i get bored really easy and i'm so tired that i can't think of things to make but i will keep it up just so i don't go insain thanks for lending an ear and if i can repay the favour by all means you know where to find me
leigh x


joebenbeth - February 1

thank you toots2889 for you kind words the amotrypsolyn doesn't seem to be working when it should i'm currently on 60mg a night and i've made an appointment with GP to see what he can do
with regards to meds and my daughter being in with me i will def keep you posted to how i get on take care you are all in my thoughts x


joebenbeth - February 1

hi kvc33 i have taken all you kind words onboard and i've found from past nights when we have slept away and she has had her own room she actually sleeps all night and we have abit of trouble getting her there but she does go and she stays there which has on the odd occasion made a slight difference in how i feel i don't feel so tense but when she was younger we had very bad temper tantrums not the kind where they don't get ther own way but the kind where they just kick off for no reason and nothing you can do will calm them down (even giving into her which i know is wrong just made her worse) so she was under the doctor who said she has a very active brain and it's constantly on the go and they have also been keeping an eye on her for ADHD but have said it's to early to tell at this stage but i will keep you updated as to how it all gos thamks and take care x


joebenbeth - February 2

thank you so much pixelmation i will certanly try the magnesium as it can't make matters any worse and i hope all gets better for yourself and the little ones x


Fantod - February 2

joebenbeth - Welcome to the board! I am very sorry to read about your situation. I think that I may be able to help you better present your case for a third bedroom for your daughter. I am going to write out a through explantion of Fibromyalgia that you can copy and paste to another document. I'll phrase it to address your situation and for the UK. I hope that it helps.

If Amitriptyline is not working ask your gp for "Milnacipran" which has been used in Europe for decades to treat Fibromyalgia. You should probably still stay on Amitriptyline to address your sleep issues, but use a lower dose at night in tandem with the milnacipran.

And, magnesium is a very good suggestion to help your daughter sleep. Hving her watch TV in bed is not. TV watching in bed is not condusive to sleep. If someone is already prone to sleep problems, TV will make it much worse.

Ok - here is the part that you can copy and paste to another document. You will have to fill in the blanks where I have left "XXX":

This is my XXXX request to gain medical priority housing due to chronic illness. As you may already be aware, I have a syndrome called "Fibromyalgia (FMS)." I have also had a kneecap removed which makes me unsteady on my feet.

FMS is a disorder of the central nervous system that causes widespread, chronic pain. The mechanism that causes it is not understood. there is no cure but it can be managed to some degree with precribed medication. FMS is recognised by the National Rheumatoid Arthitis Society.

One of the primary problems Fibromyalgia causes is disrupted deep sleep. Your muscles require deep sleep in order to repair themselves from the days activites. FMS disrupts the deep sleep cycle with short bursts of high intensity brain activity. No deep sleep means higher levels of widespread pain. This rapidly becomes a vicious circle. A crucial part of treatment is addressing the sleep issues associated with FMS. Taking medication does not always solve this problem.

My five year old daughter also has sleep issues. Due to FMS, I am chronically sleep deprived. Having my five year old daughter in the same bedroom makes my ability to care for my three children doubly difficult. She is up and down frequently during the night which further disrupts my ability to get any sleep. Having a third bedroom for my daughter would allow me to get the rest that I desperately need and enjoy a better quality of life with my family.

My five year old daughter who can not speak for herself is severely impacted by my sleeplessness. A child her age needs a minimum of 11 hours of sleep every night. Having both of us in the same room may be affecting her cognitive abilities and adding to her emotional outbursts. When she has an opportunity to sleep by herself, she sleeps through the night. The councils refusal to provide me with medical priority housing is compounding my health issues and badly affecting my little girl. She really needs her own bedroom to get proper rest when I am having another bad night.

My children are my first priority and under the present circumstances, I am really struggling. I am falling more frequently due to exhaustion and being unsteady on my feet. I'd would much rather spend quality time with my children than at Casualty due to another fall.

I would appreciate the councils further consideration of my application for medical priority housing. Thank you.

Good luck to you!


SpEdTeacherInPain - February 2

Leigh, I know what you mean about walking away and not coming back for their sake. But, then I look in those big brown eyes and I couldn't imagine my life without them. I work as a Special Educator with children with severe medical impairments so, I am regularly in touch with support staff and case workers from area agencies designed to help. I bet it is frustrating to hear someone tell you that your housing situation is not creating a problem when you are so frustrated and in need of a change. You mentioned that your daughter shares a room with you. Does she have her own bed or are you both sleeping in the same bed? Is the room large enough to create some divided space with a hanging curtain or some other type of divider? I am wondering is your sleeping problems due to how much space you both have, are one of you snoring at night? My six year old would not sleep in his own bed from three until five. He slept with me and my husband slept on the couch- (great for a marriage). It was horrible because he slept sideways and snored all night! We also had a 120lb dog that slept on my feet at the same time. Finally he just grew out of it. Unfortunately that takes time however, seeing as how he is about the same age as your child maybe their is a connection with their development. Anyway, finding that out certainly does not help the immediate problem but know that you are not alone in any way shape or form. Though I do not know you, I feel your pain (literally) and am rooting for you all the way! Peace and good night sleep..CECE


SpEdTeacherInPain - February 2

Fantod- In such an Inhumane world it is a breath of fresh air to see someone do something from the heart for another person. You get a gold start my friend! A great big gold star!


joebenbeth - February 3

i can't say a bigger thank you spedteacherinpain it was really such a lovely and thoughtful gesture and i certainly will be using what you wrote and will keep you informed and it really has lightened my mood today to read such lovely words from everyone i'm glad i'm not alone anymore and that i have you guys to talk


joebenbeth - February 3

see i'm getting all confused again i ment to thank fantod for the great info but it don't mean that i shouldn't say thankyou to spedteacherinpain as well they are all still such lovely words and i mean the same to you all as for my daughter sharing a room she doesn't share a bed she has her own one but there is no room to section off as the room is only 13ft x 12ft approx and what with 2 beds and 3 wardrobes there isn't any walk space so that idea is well and truly out but i'm def gonna try magnesium i have nothing to lose any more (can't lose any more sleep lol) i'll keep you all updated as i have doctors on the 3rd feb good night all and god bless xx


Fantod - February 5

Leigh - Just checking in to see how you are managing. When it is convenient, let us know. Take care.


joebenbeth - February 9

hi all just checking in i've had a couple of really bad days not so much the pain but the tiredness i went doctors last week and he has told me to stop taking the amotrypsolyn and lower my iron doseage but he won't give me anything else yet so just have to grin and bear it for the mo and as for the council he backs my case 100% but won't give me a letter as he said it should be down to them to ask and pay for it so i put in my appeal on friday with the great words given to me by fantod and now i'll just have to wait fingers crossed how is everyone else been hope you all haven't been to bad xx


January - February 9

Hello. Unfortunately, I'm pressed for time right now, and can't read this whole post, but reading some of it, have to say:

Joebenbeth - we are all pulling for you

fantod - excellent post

and the rest of you - what a great supportive community you are. Gosh, I wish I'd had this place years ago when I was going thru the crazy run around of getting diagnosed. Bless you all.

Here's my thought about sleeping aids. Does anybody recommend Benadryl? I know of people who give it to their young children so they will sleep on long plane flights. I don't know if this is OK or not. I think Benadryl is fairly harmless. I used to use it years ago - but now it interacts with meds I take. Another over the counter sleep aid I used when I was much younger was Unisom - 1/2 tablet really helped me sleep. Just an idea, I think others in the community here would know better than I if these are OK to give to children. I am not sure.... ??

I am suggesting these because I think you are saying you don't have prescription meds right now. If you have prescriptions, I'm not sure Benadryl or Unisom would work - or be safe, due to interactions.

Wishing you the best.



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