Body jolts

Ok just saw gp (not my normal guy) as my jolts are getting more often and are messing with my head making me disoriented, foggy, confused. So all he said was let's put you on sertraline or amyltriptalyn! But neither worked for me 😭. Sertraline (25mg) made me miserable and I sat on the sofa for 6 weeks and amyltriptalyn made me to drowsy (10mg) . Yesterday I tried to rest in day time and spent the whole 2 hrs jerking my body... gp is looking at other ssri's to help me relax he says to try have a bath , relax before bed...I just think he's missing the point I'm not stressed or depressed... or am I missing the point. I'm beyond exhausted now cant get any proper sleep , snapping at the kids ... there must be something else I can try ... any hints tips drug advice .... I just want to sleep 😜😝

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  • Prozac is the drug name for fluoxetine ..

  • See can't even think straight... he's just called and said let's try fluoxetine every other day for 2 weeks then every day then review in a month!! I need a soft garden chair do I can enjoy sleeping in the garden rather than indoors on the sofa!!

  • Prozac knocked me out totally and made things worse. Amitriptyline 20 mg in the morning 20 mg at night have calmed down the body jolts, tremors and twitches , they do unfortunately make you lethargic but tolerating it better and managing to do a bit more during the day and my seizures are easing up. I was on two week course of zopiclone which did help me sleep but they are awful to get off again. Just goes to show how we are all different and what works for one person doesn't for another .

  • Thanks Ailsaw... I'm just loosing the will and with 2 kids of my own and a friends 2 I'm looking after after school time I'm argh... and I try to sleep but the jolts disturb everything.. I hate meds.. but I guess I need to keep trying.. the ssri i couldn't function at all and amytriplatym I couldn't wake up I was a zombie.... off to rest and body jolt... then grab meds later to try!! I might taken them at night see if that makes any difference in the loosing my mojo effect 🀣

  • Hang in there I used to have them every night too but they are getting much less , just have to find what works for you. Don't know how you cope with the kids admire you for that, my head wouldn't cope with the noise alone .

  • Bless you unfortunately I have no advice. I did try amitriptyline but it messed me up completely - I think I was actually hallucinating so only tried it on 2 days but I was a zombie and slept for about 15 hours I think. Couldn't even make my eye lids open in the morning to get up with my kids and felt drowsy for a good few days afterwards. Have you had your B12 tested? x

  • Amyltriptalyn did that to me too and they wanted to up it!! Yes they did full checks when I slept 18 hrs a day last summer! According to their records I've had jolts since last July... I think it must come and go but it's really bad at the moment! I've picked up new meds to try but they say it takes 6 weeks for any effect 😱. Mind you I find I react within a short few days... I just want to sleep!! Thing is I don't understand how anti depressant helps if it just increases the brains ability to absorb more serotonin! I'm not depressed (not yet ) or anxious... how does it help stop the jolts? Sigh 😩. Waiting on hubby to come in so I can take meds and hit my bed... 😜. I'd like to know what causes the jolts so I can stop it happening! Time to get reading πŸ€“

  • Good luck with the meds - I hope it helps for you and you get some sleep x

  • SSRIs block the reabsorbtion of the seratonin your body produces - Selective Serotonin Re-uptake Inhibitors. Which is lovely, if you have a low seratonin problem. The problem with SSRIs is that they hand them out for EVERYONE and not everyone has a seratonin problem. They are guessing you have a seratonin problem, but they have no way of knowing. If you don't have a seratonin problem you won't get anything but nasty side effects. I speak from personal experience here.

    I learned in the last two years that I have low dopamine. I've been taking a supplement called tyrosine which helps raise it. Seems to help me. Might not help you.

    The reason they throw SSRIs at us, is their hope that it might improve our moods and calm us down because when we are calmer and less depressed or anxious we tend to do better. This is just guesswork on their part and as I say, if you don't have low seratonin - they will just make you worse.

  • Lol ... I so get this... I'm calm, not depressed, not really anxious at this time!!! Hence why I ask why treat me with ssri's when there's no proof I've got an ssri problem!!! My son was put on ssri for depression and after 3 weeks picked up a knife to slit his throat.... there must be another way or drug to help me sleep through these jerks!!! Mind you I still need to be able to wake up if the house catches fire.... I just think they are clutching at straws.... I mean the guy had no idea when I said I had fnd he just looked at psychological reports and said how did pt go! I said can't get local pt ! How's cbt going... I can't get 1-1 cbt locally I need to drive 2 hrs to London to get it not available locally.... oh he said! So now I have these drugs which I don't want to take, I want to sleep but can't .... I do sometimes wonder what's the point... I'm destroying my family .... not good enough for anything... for Fucks sake my husbands complaining I haven't emptied the dish washer.... serious I haven't slept properly in weeks... but I've cleaned bedrooms of his cans of beer and cider and cleaned and done dump runs of his crap... I'm only hanging on because I need to support my kids! I'm sure he'll find my comments as he tracks my phone, Facebook, texts and calls .... I've had to leave this group before.... sorry ... I've had enough.... I feel so alone... I've got no help... argh.... but I have to keep going on...smiling whilst struggling... sorry don't need this crap... so sorry....

  • Hugs! Listen, right up front you say you're not anxious or depressed and then describe an incredibly complicated situation that is absolutely anxiety making and depression making. You are clearly a super SuperMom. That's a huge burden right there. Let alone all the medical stuff.

    You. Have. Too. Much. On. Your. Plate.

    You need a break, dear. Some quiet and space to heal. You deserve that.

  • Dear englishmumof2, I know and feel where you are although my child married, divorced and met someone else had another baby since I've been ill, I am no help for her, baby was in hospital with sepsis, what use am I , just sitting hoping all be ok, my parents are now both ill with viral infection, my dad really ill, me no help at all for them, I struggle to do small things around the house what you are doing is absolutely amazing, you should be proud that you are still an amazing mum. I'm very lucky my partner works all day, walks the dogs , cook tea as he knows I not hungry and forget to eat also he's frightened I'll leave cooking and wander off and forget and blow house up. 2 times so far I've got as low as you, it was strange, I felt I was doing the best if I wasn't here anymore for everyone. My partner got so upset and made me promise to keep going but like you I don't sleep, so tired but no sleep, no medication will put me to sleep, I've tried so many, just one night, but nothing. I wish someone would help you and just see your struggle and how your fighting, I'm proud of you, you do so much dispite how your feeling but someone needs to listen to you and just help in any way or form to get you through this rock bottom phase your in. I feel mine coming again but I know now eventually it will lift and go, just have to wait through it. Your a role model on here for all of us who struggle and arnt even dealing with all your stress. Love to you and proud to know you on here. Love Lisa, big hugs sent to you. πŸ€—πŸ€—πŸ€—πŸ˜ŠπŸ˜ŠπŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—

  • Have you tried an antihistamine? I use over the counter diphenhydramine (Benadryl) occasionally. It has sedative effects and can help calm you down AND help you sleep.

    Vistaril (hydroxyzine) is an industrial strength antihistamine that's used as a sedative to treat anxiety and tension. I think you need a prescription for vistaril though.

    Side effects though. Look out for them. Always look out for side effects.

  • Yes I know of Benadryl!! Not used my self!! Might look at it.... just am disappointed 😭

  • You should be able to find a generic version of Benadryl for much less. Diphenhydramine. That's the active ingredient.

  • Great I think it's in nytol 🀣

  • It is!

  • Hi, sorry to hear you are having such a hard time. I do not have psychological issues but was given an SNRI similar to SSRIs for neuropathic pain as many drugs can be used for different reasons, but I had a really bad reaction to it and had to stop it.

    It sounds like you are coping with too much. I'm alone and struggle. Can your husband come to an appointment with you just to get some info? I mean with someone who knows what they are talking about.

    I agree that docs who don't know what they are doing and will hand out antidepressants like there's no tomorrow. Instead they need to listen to their patient.

    This disorder is frustrating and then doctors think you are depressed or anxious when you just want them to get their act together and help.

    I as some people know got diagnosed then ignored so I called around everyone I could think and called my local council OT department. Ask them to come round and do an assessment in my home. Say you are really struggling and they need to come now. I got some aids to help me in the house. Just even getting a chair to sit on in the kitchen to prepare dinner can make a difference and all those little things can take a load off some of the bigger things you have to do with your family. It's about trying to balance your energy and everything else. The OT referred me to a neurophysio who is specialised in FND and while she is not offering a cure, it's just simple gentle exercises and doing an assessment of your physical capabilities, iv poured my heart out to her and it's great to have someone who totally gets it as I have a good GP but he doesn't.

    For me I have reactions to just about every drug out there so tend to avoid them but if one works for you go for it. I have tried amytryptilline before and found I'd be xonked til about lunchtime the next day. This was when I was working. So the SSRIs might have been given for neuropathic pain but the issue is they take weeks to get into your system.

    Also I found the problem when you go to your local doc is that I tell him everything that is bothering me so he probably thinks I'm a complete lunatic when I just need to tell someone how bad my week has been. So glad I have this site now. I usually also forget why I went so have to call back to ask for something due to brain fog as iv went off on a tangent while talking.

    Sleep is so important for everyone but especially fir us. It can make a huge difference to your day. There are drugs that are muscle relaxants such as diazepam but I know these are hard to prescribe. Can you have a nap during the day while the kids are at school?

    Also I find that if you are stressed e.g. I had someone be rude to me on the phone that my brain melts then I can't concentrate for the rest of the day. They might not even realise what they are saying but it automatically affects me. Then I can have physical symptoms.

    It's sounds like you are doing a lot physically. Can you get a friend to come in and help you?

    Also does your husband understand your diagnosis? Just asking because I'm alone and total neat and tidy but iv went from cleaning once a week to once a month and now blacking out once a month although I break down tasks so il clean surfaces one day then the next day vacuum. Even that got too much and I passed out so I'm about to get a cleaner in.

    Are you on PIP? That can also help a little bit if you need help in the home.

    As a health professional (now not working) I would advise your husband that a little support goes a long way. I don't know him so I'm guessing he works? I would say to him that you will have good and bad days and that you may not be able to empty the dishwasher every day but you know it's there but you need to pace yourself so that you don't end up totally in bed unable to do anything as this disorder as is on the FND hope website is as bad as Multiple sclerosis or Parkinson's disease. So you want to keep being able to be active as a wife and mother but not pushing it too much. You need to learn when you are having a bad day to leave the dishwasher or get help with it and then there will be days you can empty it again. Also the stress of not being as physically active as you used to be can be very upsetting. This stress can then lead to more symptoms and affect the brain with brain fog or memory and concentration issues to be specific. The more support even if it's just a better understanding for your husband might help. I think doctors forget about the other people in that persons life so can you get your husband go see the original diagnosing doctor or maybe be with you when the OT comes out. That way they can explain everything to both of you and he can hear the things you are struggling with. They usually do a couple of appointments but if he can be there for one? Sometimes it is also hard for partners when if we don't know a lot about this disorder how do they then make sense of it. We are going through the symptoms but as iv been told because you look ok on the outside people don't think you are disabled which you are.

    I was given a walking stick and the difference was huge when I was out. People would move out my way and let me sit down on the bus etc but my arms are also really weak so I couldn't continue putting more pressure on my arms and had to stop using it which was a shame as it did help my balance.

    I also say try to (and I know this may be impossible for you) but do things which you enjoy. So could you and your husband do something nice like go out for an afternoon, go somewhere nice for lunch. Maybe something you both enjoyed when life was easier and you were healthier? When we get this disorder it can take over and we forget to do the nice enjoyable things we used to. I'm not sure of your capabilities but it's just a suggestion.

    Sending you lots of hugs and hope to hear you on here again πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ˜

  • He doesn't get it unfortunately , he's not that type of person! He works 10-10 m-f and travels in to London daily ! He can't/ won't go to appointments with me . Last summer I was so ill I sent him away with the kids and he complained that I was a bad mum just choosing to sleep rather than do stuff with the kids. Can't claim pip until after June as I've been abroad 7 yrs! I'm just frustrated as I'm exhausted ! I do try and sleep in the day but can't switch off then the jerks kick in making any sleep disturbed.... I think I forget the pressure I'm under dealing with my sons issues! But people have it a lot worse ! I'm just on my own pity party at the moment! I do walk daily with a dog group for about an hr this is probably why I can't do so much at home.... but it's my only human contact all day really. Maybe I need to stop doing the long dog walk and focus on house work 😱. God I'm a moaning old bag at the moment... need to kick my self up the ass and just get on with things ! Husband is not interested in doing stuff as a couple ... any way... popped my new pill today hoping it works soon I'm

    So tired 😭. Have a great day 😍

  • Hi just back from an exhausting day. Sounds like you're having it tough and you are allowed to feel sorry for yourself. I had a really miserable day not so long ago. The outside world just doesn't get it and there is no better or worse off people. We are all here to support each other as we have different issues but I think you must be doing a great job having a family to be in charge of. I struggle on my own. I've just come back from the phone shop where I got my phone replaced as it's been playing up and my right arm was dead, left one tingling, and having to sit for do long was worried about being able to get back up. The manager was rude and kept insisting I put all these passwords in when I told them my hands were not working. Obviously didn't believe me until I burst into tears in a very large store, then they couldn't work fast enough. Probably to get me out. Probably doesn't look good making your clients cry 😭 I was just so exhausted and thinking can I get on a bus home? Can I get my pass outbid my bag with no arm strength.

    It's great to be healthy and ignorant.

    I think human contact outside is great. I know I wallow when I'm stuck inside. Can you do a shorter dog walk or stop halfway for a coffee and sit down? I'm sure you waking buddies would be sympathetic. Maybe it gives them an excuse to relax too 😊

  • Hi Amallia,

    We walk across fields and through woods! It's about 2 miles just plodding! I know I'm Lucky I can do it but it's probably knocking out my stuffing so I'm exhausted all day! Might just walk the field up and down then go home!! That's about 20 / 30 mins walk! I would miss it as we all just chat and off load! I need to find a cleaning person to keep on top of the house! I had to give up doing the garden.... arms are weaker now... I struggle to pick up the dog... I thought she'd put on weight till others said no she's light and handed me their small dog that I promptly dropped... I just think I've just been kidding myself what I can do... I need to sit and rethink what I can do... I'm thinking I need to hand my customers over and give up my job, it's only Avon but it takes a lot of walking and writing, I love it and my customers but it's another thing to do... mind you my lovely team can benefit from my customers!!! Hope you have a better evening!! 😍

  • I'd say never give up but maybe just smaller steps. I find it so good to get out amongst people and just talk. Also get a cleaner, I'm about to, I just can't do it anymore. It then gives you a bit of energy for something more worthwhile. And can you take a breather from Avon and go back to it? I honestly don't know how you get everything done every day. I think it's a good day sometimes when I make my bed, feed my keys and have a shower and sit down without falling. I also have a cut off point where no company or person can call me or email after 4pm that's when I stop and I use weekends to relax as I know no one will bother me. I know you don't have that option and I'm not a mum so not trying to give you advice but maybe someone can help me here? Try to find some switch off time for yourself. Wife's, husbands and, mums and dads help me out here.

    Btw I'm always here after 4pm for this group xx

  • Thank you Amallia, I have all day to rest while kids are at school but I still have everything else to do! So I now need to prioritize and Avon can be covered by my team! I can pass my customers on to my reps! Keep them making money and my customers covered!! It's my life line to the world but something's got to give! I don't know... I need to start making some changes πŸ˜‚. Changes are hard to do ..

  • I totally agree, break things down, don't try to do it all. You are no longer superwoman. I have had to learn that over and over again. I over do it, and pay later, but for some reason I don't get that in my head till I do it again and again. I have learned from a therapist that she no longer makes a "to do list", but instead makes it into a "ta-da list". What I mean by that is.. she writes down the things she accomplished that day, not the things she needs to do. We all have a list a mile long, but we can't do that any more. We need to be happy with the things we have done. What you listed above was a lot, in addition to kids. Some days may be less, some may be more. But you have to pat your self on the back for doing anything some days.

    Yes, try and get some sleep. I hate to even say it because I am coming off of it, but at my worst times, I would take Xanax, and it would knock me out for a few hours, but would make a difference when I really needed it. It would calm down the muscles, and I could get some much needed sleep.

    And really if you can, I know you said it was very difficult, but if you can do some therapy to get over what happened with your son, and to learn to cope with everything that is going on, it would help. You could even see if you can find a therapist that will work over skype or face time. What ever you are able to do over the computer. That way you wouldn't have to travel. I did that for 6 months to a therapist across the country in the US, and it was nice. I didn't have to leave my house to do it.

    I wish you all the best with this, you have been through the ringer that is for sure. Huge hugs your way. I pray that you will find the help you need, and the rest you need as well.

    Oh, one more thing, I agree with Amalia, try and find things that you do like to do. I have picked up my drawing from a million years ago, as well as painting, and it is amazing the therapy it brings to me. It truly calms things down for me. Even those new adult coloring books would be good if you like to color. It helps me to focus and calm the movements way down. Not completely sometimes, but so much more than if I didn't have it. You need to find joy in something simple, something that can take your mind off everything else even for a short time.

    Best of luck. If you would like to chat, I am here.


  • Thanks cgarff! It was my sons 3rd attempt... so I've got used to bottling up how scared it makes me and the stress of him going out by himself and how he'll cope with other stresses in life .... but I can't help me until everything is done here.... I need to get it all done ... I have to pack car tonight so I can get to the dump tomorrow ! I can measure carpets as well that's not to hard... need to find measure thing first... god I feel sick.. right... the young kids are now back at their home! Eldest is out with cousins and youngest on pc... must put car at back of house and fill it up!!'

    Seats out first:

    Put in broken pool table

    Put in old paddling pool

    Put recycling in as I can get cardboard done tonight

    Put in stuck that's trash from green house

    Need to find someone to put glass in green house

    Empty shed of stuff

    Gardener coming next wed to do front garden

    School meeting tomorrow

    Board games and all books to charity store

    Need to find it buy curtain hanging things...

    god what have I let the house get this bad...

    deep breath it's going to be fine just crack on you can do it!!

  • I got about four items down your list and then even *I* started to have palpitations! You really are a SuperMom! I can see why you're stressing!!!

    That list would overwhelm even the most steady. Seriously. Too much on your plate. How you find that space, I don't know, but you need to. You won't be able to help anyone until you help yourself!

    I may be projecting here, but I've had to severely cut back my "take care of this" list.

  • Lol

    I know and that's not even the half of it... I just need to get on.. I don't even know what to do for dinner.... oh yeah I've already cooked it! Beef stew just need to dish it up 😍

  • Deep breath is right. That is one beck of a tada list girl. Oh my goodness. Please don't overdo any more. Please take a moment to breathe. Count the breaths, slowly in, and slowly out. Be mindful of each breath. Notice how you are feeling. Are you majorly stressed out then breathe more. If you are feeling a little more relaxed.. Good. Please take it easy. You will make it, and get your family to help!

  • This time last year I had severe tremors (imagine epileptic fit 24/7 which NEVER stops! friends and I dubbed it 'The Churchills' due to my bobble head πŸ˜‚) and the first medication that actually had any affect on it was simply Naproxen! It didn't stop it completely but it reduced the intensity so much that people sitting next to me no longer heard my teeth chatter.

    Don't get me wrong, I'm on a huge amount of strong drugs but the 3 I believe have the greatest control over the tremor and the myclonic jerks are:

    Naproxen, clonazepam, and amitriptyline (0.5mg clonazepam and 30mg amitriptyline nightly; 1000mg naproxen daily)

    It's so difficult to keep track of which meds improve which symptom. I hope they can help you figure it out soon! Have you noticed if there's anything unique to the onset of your tremors or occurs only during tremor? (E.g. Muscle tension?) I also take 40mg of baclofen daily which has been reduced from 70mg initially - it helped to relax my legs and back when it was at its worst. I find 40mg is a good balance now.

    I understand how upsetting it is at having to pump yourself full of drugs. I didn't even take paracetamol for a headache prior to all this drama and now I'm on 47 tablets a day plus liquid oramorph! However, once you can control your symptoms it becomes so much easier to recognise cause & effect at which point you can then begin to strip back the layers of medication and see what works & what doesn't. That's the point I'm at now. I am very close to the point of balancing symptoms & side effects vs medications which is a really good feeling. You will get there too! x

  • Now to add to my issues the landlord just entered my property with the agent when I was out! No letter or call or email... and she's very unhappy as it's untidy... ok yes I'm not the best at the moment as I rest a lot and the kid spilt red stuff on the old raged (20 yr old) bedroom carpet but I'm replacing it.... honestly they stress of renting privately is killing me... I'm always on edge... can't decorate so everything is woodchip and magnolia.... called council today to ask if we can go on the housing list but I have to prove that family have lived in the area over 10 years... also prove how much we sold our house for 9 yrs ago and show any profits... as we're currently renting privately they won't let us go on list ... my illness is not considered unless I need adapted housing immediately ... my sons mental health is not if their concern even though the threat of moving every year puts tremendous stress on the whole family... I hate this... this isn't living... it's a nightmare... sorry I'm having a bad day 😱😭

  • Bloody hell, no wonder your struggling, if you phone your dr and tell him how bad you mentally are he can get you health in mind charity, they came to my home and talked to me, there wasn't much they could help me with and discharged me and wrote to professor Edwards as I am just left waiting appointments that professor Edwards thought I'd had, BUT for you and your children they could help you so much more then me. Please contact your dr, it's their duty to help you, my last dr done nothing for a year, this charity is outstanding in being able to help you, but you must reach out first, my partner had to for me as was on verge of suicide and didn't even care anymore. Please reach out, don't leave it like I did till it was so nearly too late. Hugs. Lisa.πŸ€—πŸ€—πŸ€—πŸ€—πŸ˜ŠπŸ˜ŠπŸ˜Š

  • You poor thing Lisa-Anne ! I've seen prof Edwards and there's only so much he can do... normally I'm ok but today is just a bad one! Drs have enough people who are sick they don't need me complaining I'm stressed... can I contact them direct... mind you ... I'm awful I don't ask for help I just going saying there's people worse off than me.... I even told my mum to move back to Ecuador asap so she didn't get burdened with me and my family problems.... she deserves a life free from my stuff!!!

  • My partner contacted my new dr explained how bad I'd got and he was too frightened to leave me, I think they contacted my partner and then came to see me as cannot speak on phone. If you can ring then please do, it might be a bad day but you still need help and you are entitled too it, just please don't leave it like I did. Things would have got worse and I wouldn't be writing to you today. πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—

  • Ps, I told everyone to get out of my life, my daughter left in tears 😭 not proud of myself but like you I didn't know what or where to get help. πŸ€—πŸ€—πŸ€—πŸ˜Š

  • Plus it's not that bad really! I just need to get house immaculate and keep on top of everything and it will work it's self out!!

  • It doesn't get better without help, I thought like you for a long time, this charity helped sort pip as I'd filled them in all wrong and couldn't get it, through them I got it last December, they helped with our debt we had accumulated having to pay private as my last dr wouldn't help. There is just so much help for you if you speak honesty to your dr. Xxx

  • If I speak I'll breakdown... I can't do that too much is a stake 😭😱

  • But it's what you need, just to speak to someone who understands what your going through, there is a lot at stake. YOU, you can get help before you break. That's worth everything. Please think about it. When floodgates break you need help in place for you and your family, health in mind did that for me, just listening and helped where they could. Was worth its weight in gold for me and I know for you too. If not get a friend to ring your dr, I was incapable but my partner could do it for me, I'm so glad now he ignored me and did it. Xxxx

  • My husband has no idea....

  • Ok, forget about meds & the illness as 'an entity' just now. You are up to your neck in stress missus!!

    You need a support system, not just a tablet. I strongly advise you to contact your local MP, explaining fully, and in detail, exactly what you're current circumstances are and the effects of such. The MP office will be able to advise and assist you with support entitlements, whether it be DWP or council. The MP office can direct and lease with the relevant departments centrally and take a lot of the stress out of 'information seeking' which is definitely something you don't need added to your plate!

    Enter your postcode in the search facility on the website above and it will give you all the contact details.

    I'm involved a lot in politics myself (albeit in Scotland where some things work differently) so I urge you to contact them and under no circumstances allow them to fob you off. If it takes emailing daily, then twice, then 3x a day until they arrange to see you and discuss your position then that's what you do. Now, obviously I don't know you or your full circumstances, so I can't say that they will be able to wave a wand over your life and make it better but I usually find people are surprised when what they 'assumed' to be the case isn't entirely accurate - even if it's just a local befriending charity that can provide some assistance! There is ALWAYS somewhere to turn. You just need to know who to ask.

    Good luck xx

  • I know but if I open my flood gates everything will fall apart and I can't do that! I have to hold it together for everyone else so they can function... plus I'm trying to work as well....

  • The floodgates are going already, that's why you need real help, when they go it's horrendous as you end up not caring anymore about anything. Believe me I've been there, it just takes so much then bang. πŸ™ I always thought I could cope but this illness beat me.

  • Well if I just walked away then there's one less problem to be fixed here!!! If they don't have to accommodate me... and if I go my mum can move in and the kids will get the better support and family will rally around!!

  • You know deep inside it's not what you really want, I knew deep, a good friend can ring for you before too late. Please try. Xxxx

  • I also told my partner to dump me at Drs and leave me there.

  • Bless you! I'll be fine just need to do everything so it will be ok just get on top if things!!! There's not much to do before I can just rest and get myself back together.....

  • No no no no!!! Your flood gates are what is making this all happen, by keeping this all inside, is what is causing these movements to become hyperactive. I truly believe that. It may not be the total cause of it, but reading the things that are said, you are not helping yourself to become better by holding it back. Oh my gosh.. you can't do this on your own! I have come to realize this with the therapist that I see. I have never found value in them until now. My therapist has helped me to deal with things one at a time. You don't have to let it all out at once. Baby steps. You need to work on things a little at a time, but if you keep them all back and don't let them out, than you will continue to get worse and then you might do something drastic like your son. You can't let that happen. The most important person right now is you! You can't do for anyone else until you have taken care of you!! My heart is breaking for you right now.

    Please look for help in any way possible. The direction you are moving in, you are headed for even more physical and mental problems. ie.. depression, hurting yourself, etc.. and that is not where you want to be. You have got to be able to talk this out or that dam that is holding everything in will break and it could be a disaster. That is why spillways are made on dams, to let out water here and there when needed. Dams are only good to hold back so much. They need a release or they break. The same is with you. You need to release things. You need to say them out loud. You need to get it all out there in the open to someone else who can help you before you break.

    Please, please, please get some help. A friend, a doctor, a neighbor, your spouse, anyone! You can't do this on your own. You sound so overwhelmed which is where I have been, and am still working on. I held everything back, shoved it all in my closet, and walked away from it thinking that it would hold it all. I didn't want to have to look at it, or worry about it. But then it came to bite me in the butt in the end, and here I am dealing with this hell called FND.

    please for your sake and your families, get some help. Don't hold it all in. You have got to let it go to be able to get better, to be able to sleep. Even if you have to just write it down, it makes a difference. I have a private folder on my computer that is password protected where I can write everything and anything down that I need to. I can be a rude, vulgar, nice or anything, but I am getting it out. It doesn't matter what anyone else thinks, it is mine to unload on. So if you can't talk to someone else, and your spouse is a snoop, create a password and let it all out. If you cry, that is good. Your body needs to release those feelings. I have learned that the hard way. If you have a moment during the day where you are alone, take a huge pillow and scream into it. Hit it, get out that anger, anxiety, frustration, pain, everything that you have in you. Your pillow won't mind! It does help, I promise. Its something that my therapist has had me do, and it felt great!

    Please try something to get the help you need. I hope these ideas will give you something to try. Best of luck to you and your family!



  • Your amazing charff,

    Having been abroad for last 7 years I have no real friends here... family are too busy getting on with their lives! Having a quiet eye drop as we chat. I know I have to let this out but I have no-one.... hubby doesn't believe it's true... he thinks I'm lazy and stropy and nagging and shouting! See I have to hold it together ... if I don't then my kids will fall apart . I can't do that.... I'm lucky as I'm not one to want to hurt myself or die... I can always kick my self up the ass and say " listen your not dodging bullets or bombs so get up and carry on".... not that I'd ever say that to another person in a million years..... I just need to make a plan get things sorted then it will be ok... yes I know I'm just trying to talk my self in to it will be ok but what's the worst that can happen?? The house is still untidy when they come back and we get evicted!! Probably not a bad thing they left us with a 2ft hole in the ceiling for 3 months in the winter last year!!! Boiler has been leaking 6 months they won't do anything.... Anyway I've been chatting instead of loading the car! Thank you so much I do really appreciate it have a nice evening I'm going sunny weather tomorrow as blue skies always help


  • Just remember you are important too. Put yourself in someone else's shoes. What would you say to them if they were in your position? Would it be good, or would you kick them in the butt? Being a mom, I'm sure you would do anythj,g you could do to help them right? I know I do. Well then, you need to do for you what you would do for them. You need to think of yourself. Be kind and loving to yourself. Get your kids to help do the dishes and tidy up, your husband as well. You are not the maid, superwoman. You are one that is fighting a very debilitating disorder and you need help to recover. Be kind to yourself. Don't kill yourself off.

    You have me if you would like to chat! Your not alone ok?! Take care and email me. if you have a moment and need to unload. I'm a pretty good sounding board ok!

  • Thank you! I've removed car seats and put pool table into the car! I'm feeling exhausted but bit better! Currently listening to 3cr whilst I figure out what to do next 😍. And no I would be saying to someone in my position exactly what your all saying! I'm

    Just not good at putting my self first..... hoping if I can just get things sorted here I'll be able to better cope! It's been fantastic to off load though just what I needed xx

  • Every bit of what you've said Cheryl - I endorse fully! Yes!!!

  • Thank you! God I've got to hold it together at a school meeting tomorrow to discuss my mental health child.... nothing worse than breaking down with school staff!!! So smile pasted on whilst I pick up my friends kids. Then back home to feed them all tidy kitchen! Throw junk from the garden into the car ready for dump run tomorrow! Measure rooms to go and order new carpet to replace damaged one. Put tap back together that was leaking so we took apart to mend! Buy newcurtain rails to put up instead of the blinds we hung... got to get the house ready for the next insiecation in 2 weeks... and we're away next week and following week kids are home so next two days are going to be manic 🀣

  • Good luck and lots of it, wish you had my partner to help you as he has for me, he has struggled to understand this illness and is angry and bitter now as family on both sides have shown their true colours. Still they say you live and learn especially with FND. Wish I could help you but unable to help myself, thoughts with you and hopes. Xxxx

  • Thanks for listening... sometimes you just need to vent! I'm pleased your partner is there for you! I'm sorry about family it sucks when you don't get support! My 2 brothers live miles away!! My husbands are all a few mins away but have their own lives to live! I've got broad shoulders and have faced worse!!' Honestly I'm having a paddy about nothing..... normal life will resume soon xxxx take care and thank you xxx

  • Hi I just got my phone fixed so have just read the rest of the messages. I don't think you should take this lightly. I too came from overseas. I was in an accident and had to return here to get medical treatment but it still took 2 1/2 years to get diagnosed. I can understand how difficult it is being back. I was sure I would catch up with some old friends but everyone has gone and I don't speak to my family they have no idea about this and I'm totally alone. I agree with everyone I used to get colouring books and pens for xmas right up into my 20s! It was just for relaxation and you can switch right off and even before I got sick because I've mostly been single and independent (found the love of my life right after my car accident then had to leave him in the other side of the world) I've always given myself a pat on the back for something that iv achieved that I'm proud of myself for doing. It used to be more important stuff now it can just be getting home with the groceries. Also I had to wait 2 years for PIP and I really struggled but it came through pretty quickly. I filled the form out myself although I have trouble with forms as there was a wait for assistance and I wanted it send straight away. I then called them and said I wasn't sure if I'd done it right but you will find they are really nice on the phone. One lady suggested doing it a month before it is due but no longer and they would accept that. I also had to have an assessment with an independent company but again they were really nice. I was having the worst brain fog day and I shed tears in that office just due to dealing with this for so long with no support.

    You have us and unload as much as you want to. Years ago I wanted to buy a punching bag for after work as I worked with some horrors. Now I can't do it as I have no strength.

    Screaming when there is no one around is ok I think. I've yet to try. And I would agree to maybe explain the condition to your kids, I know parents want to appear invincible but have some middle ground where you explain the symptoms and that you can have good and bad days but maybe they can help out a bit. It's better than them finding you passed out and getting a fright.

    I'm so sorry about your son. I know someone who is going through that same stress. He should also be getting some kind of help.

    your landlord should be doing repairs and you shouldn't be putting up with holes in the ceiling or a faulty boiler. By law those things have to be repaired within a short timeframe. I also agree with the seeing your MP just offload that's what they get paid for. I'm also in contact with my MP. If you got rid of a lot of that stress that they can help you with then you could focus on yourself. Never be afraid to ask for help.

    Lastly I always apply the following to just about everything I can. When you are on a flight and the oxygen masks come down, you put your mask on first then your children's. this should also apply to your health. Get yourself healthier and then you might have more energy for your children.

    If you have to there is always organisations like the samaratins just if you want to offload and babble away but maybe try to find a local social group you can go to for an hour or two during the day whenever you have the time and energy.

    We need to all hold each other up. You might be hurting but you have us xxxxxx

  • Thank you x. My sons are aware I'm ill my eldest worries when he seems my body jerks!! He's told school he's a carer as I have a mental issue with my brain... bless... he said he's always doing things...oh dear... he has no idea how much mess he makes... and he's always on a 5/6 stress scale and is sitting his first year gcse in 2 weeks so I'm putting together flash cards and study stuff for him! My youngest is autistic... barley gets dressed with out help would live in a sleeping bag if we let him and live on apples and ice cream 😜. Husband works 12 hr days 10 am - 10 pm and travels in and out of London gets home at 7pm and works 8-10 pm... so he's got a lot on his plate without my issues!! Can't apply for pip or anything till I've been back 2 years which will be in June this year. But it's not the money it's how and where to get the help.. I can drive but it's becoming harder changing gears so I need to buy an automatic so that means researching... but mainly I need a permanent roof over our heads so it's not the fear and stress moving each year. Also I need to be able to decorate the boys room as they need it to help them. Not to worry that the house isn't tidy enough. Be able to mend things that don't work instead of waiting months.... adapt the house if I end up with walking problems!! Can't do any of these things in private rental... anyhow can't fix it tonight x.

  • Contact your local social work Department get it all out and say if they can't help you you will tell your local MP they wont help or advise where to get help. They should have resources for most of your issues. In Edinburgh we have a council walk in called the advice shop and they will help you fill out forms, tell you what you are eligible for and help you apply for PIP. Also when I got my PIP it had information on getting other services such as reduced gym membership, free travel pass like the over 60s get and information on how to get your blue badge for driving. I know that certain car dealerships are linked to blue badge help so again maybe if you get a good adviser they can help you with all this. Say it's an emergency. You cannot do this on your own.

    You might also qualify for carers allowance I think children can be carers?

    I understand if you find it hard to ask for help. I've been so independent and used to solving my own problems my whole life and no one knowing half my problems. Now I will ask for help. It's knowing your limitations but also that that help can allow you to do something else.

    Hey I cried today in a shop and didn't even care. One of the advantages of knowing no one in this city. But Wow I am blown away by your strength.

    I hope you get some sleep xxx

  • Thanks.... thing is I'm supposed to be carer for my kids not just as a mum but with the mental health issues and lack of social skills etc my eldest is a mid - high risk child! He's under CAMHS but not seen regularly! Waiting on autism testing but that's a 2 yr waitlist...I think as I've been coping with everything for years you just get used to it so I'd say I'm not stressed!!

  • I think it's sad how little help there is in this country. I used to work with children so get mad when I hear they need help but aren't getting it. And the parents who then suffer as I know someone else going through the same. Her child suffered trauma and has had no help of any substance.

  • I know... once you have a diagnosis it sometimes helps! School have been great doing as much as they can! But no one can provide 24 hr psychological support to work through everyday issues so that's my job!!! Sometimes I just want a week away from everything so I can switch off sleep and know they are ok without me! But there is not another me to be me ! In ny we had a medical team who where there when needed along with small class size (8 kids for math English science) 1-1 aide, psychologist 1x a week at school , speech therapy 2x a week, counselor available all day!! To over 30 kids a class, no aide, no on site psychologist or counselor nhs wait lists for everything... it's been a real shock.... any how I'm going to try and sleep hugs thank you for listening 😍

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