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struggling..Any advice..

Posted , 6 users are following.

dana32898
dana32898

Having a fibro flare up and struggling at minute..I need to come to terms with my diagnosis I think...I'm so tired..and fatigued all the time, the pain is constant and now my IBS has started again I'm sure everyone on this site knows what im talking about but now getting really worried If I have commitments in the week ie: going to hairdresser or a taking my child to school or going out for the day I feel panicky and overwhelmed..I have never felt like this before and I'm really worried. Has anyone been like this? Is this part of the condition? I feel as though I'm losing myself I have always been outgoing but everything is so tiring. Can anyone help.

 

2 likes, 23 replies

23 Replies

  • louise91796
    louise91796 dana32898

    Posted

    Hi honey, poor you, yes I have been in the same situation, I overcame the pain and fatigue by changing my diet, go on line for.......diet for candida........It has changed my life and I can now run around and play with my 3 and 4 year old grandchildren
    • dana32898
      dana32898 louise91796

      Posted

      Ahh thanks so much hun I will try that diet to be honest this forum is a lifeline and so helpful to know there's people who understand..Thank you.
  • tiswas24537
    tiswas24537 dana32898

    Posted

    in the begining you do babes . its all so crazy . you have so many symptoms  to deal with . and i suffered all the above and more as i am sure many others have as well.

    the panic comes from being  afraid your be ill in public and make a fool of your self ,i am always afraid of fainting when i get dizzy spells, i find it is worse if you have a lot of commitments in one week, it makes it more over whelming.

    i space mine out to know more than two  aweek . is there anyone eles who could take your children to schoool , or our there any parents that you could share taking the kids to school,

    i am much better mently and physicaly since re introducing magneisum oil as a rub helps ease the pain and absorbs thru the skin to help rebuild magneisum levals

    mag plays an important role in the body helps with fatigue pain and depression ,and applied to the skin it dosent effect the stomach causing upset

     . i use supplements only and i seem to be doing ok iv had it 10yrs ,

    do relaxtion cd twice a day helps to calm everything down even your ibs

    i started doing it when i had a bad bout of ibs and it did work but had to do it twice a day every day. try and calm down ,even now if someone strarts an argument or i get bad news my stomach will kick of straight away , no other cause except stress .

    so i no how powerful stress is . so try and do that relaxation it really does help .

    you buy cds for percivic conditions like i b s . thats what i did.

    • dana32898
      dana32898 tiswas24537

      Posted

      Yes your right It's true I get so worried about being ill in public or is it worth it because it could knock me off my feet for a couple of days..I also feel guilty because my son is autistic and needs me to be there..But you've been so helpful being recently diagnosed I don't know much about it..but i'm learning more from you guys thanks so much.

      can you tell me Tina are you on any medication or just supplements? and I will definitely try the relaxation xx.

    • tiswas24537
      tiswas24537 dana32898

      Posted

      sorry to hear you have a an autisc son , i am medium range on the ASPERGERS SCALE   AND MY SON IS HIGH RANGE ON THE ASPERGERS SCALE . and thats diffitcult enough to cope with , if you have a fully autistic child thats a whole differant ball game .

      i had a friend back in banbury where i used to live who had a autiscic  son i spent one afternoon with her and her boy , i was totaly exhusted .

      aspergers is harder enough , and other people dont make it any easier.with stupid comments , do you have a home start group in your area ,they are an charity organisation that help familys who need support . you could ask at social services , tell them you are  asking for help due to  health problems . asking is better than suffering alone.

      no i just use supplements due to my aspergers which makes me sensistive to alot of things i do have to be careful what i take .

      try and keep ocupied as much as poss do siomething you like doing every day , music  awalk etc and dont forget the cd it reall does help .

      if you want more info on supplements  your have to private message me i dont know how you do it ,  i just no you can because another person has started to do it.  the modarater for this sight takes out info that they class as advertising , but you can tell people thru private message.   

         blessings tian is my spiritul name , i prefer it to my birth name of tina . but il answer to anything . even A YOU LOL .

      some of us have started to put where we live at the end of reply just in case any of us are near by and could meet up.

           i am in filey north yorkshire ,near scarborough.

    • dana32898
      dana32898 tiswas24537

      Posted

      Sorry  I love your spiritual name lthink I might choose one for myself and it's lovely to talk to someone who understands autism it's such a complex condition..my oldest son has dysplasia which is on the spectrum but I agree the stupid comments I have heard are unbelievable..but he will only work or be with certain people he likes to keep to strict routines which are tiring but he's wonderful . If I can work it out I will private in box you about supplements my medication makes me slow and foggy if you know what I mean..

      I am in tamworth in Staffordshire.

    • tiswas24537
      tiswas24537 dana32898

      Posted

      if you like i can send you my email adresse happy to do it that way if its easier. for you. . i like routine to have trouble with change and food texture

      and so many other isuses , my son is worse than me , i have learnt to be flexable his just 24 and does not empthsis with others .

      i prefer to mix in small groups as i find large gatherings very overwhelming as does my son

      .  spirit gave me my name i always put my name at the bottem of my emails . then suddenly i started writting  my name tian ,my tarot reader told me to adopt it as it was from spirit. so now i use it alot.

      is dysplasia a corodination problem .

      think iv got it right .

      how many children do you have , i have 3, 2 girls and a boy.

      my eldest has rhemotoide athritus  .

      any how  let me know if you want my email.

                      tian x

    • dana32898
      dana32898 tiswas24537

      Posted

      Sorry tian just read this reply it's my tabs they make me really slow. Wow can we talk more it's great to talk to someone who understands autism..my son has issues ...like you and your son he hates change..hates holidays..He has a limited diet and hates socialising but he also has problems with processing and understanding and he never cries. So I really empathise with you my son gets so stressed with situations some people find easy..but he is so brave..it can be stressful frustrating and can break your heart ..so your son's 24 my son with autism is 13 how has your son coped and does he work? The future worries me tian. Dyspraxia is a neurological condition and yes it effects Co..ordination but my oldest son was diagnosed when he was 5 and he's 23 now. Yes I would like your email..and I believe in tarot readings too oh I have 2 boys 1 girl..sorry this is like a novel.

      dana x

    • tiswas24537
      tiswas24537 dana32898

      Posted

      no sweetie its not like a novel ,your just getting stuff of your chest  . well i dont want to be negative but my son was in and out of school untill i managed to get him in special needs school in kirbymoorside .which he managed alot better as there was only 6/8 in a class there were some issues but on the whole he did ok.

      the problems came when he left school just like i knew they would, they wanted him to go to scarborough colleage , i said theres no way he would manage but as per i wasnt listened to .

      it started of pretty much ok with a course ran for kids with social problems , except for the taxi forgetting to pick him up and one time not turning up to bring him home, i was in a right state and so was he. anything could have happened scarborough has a real big drug problem,

      luckly he did have enough sense to stay were he was i waited till 5,30 because he should have been hom e at 5 and i didnt want to be seen as panicking,

      then i rang the taxi firm they had no record of needing to pick him up. luckly my husband was of and he drove to the colleage to pick him up .

      that meant travis was freaked so wouldnt go the rest of the week. then he went back ,and they closed the course and put him on a full sized course and it all fail apart , his been at home ever since.thats 8 very long years.

      i tried to get him in special needs colleage where he could live away from home in surpervised situation and learn how to look after him self .

      but although he made several trips there and liked it ,he became ill and needed medical procedure to stretch his gullet which took 18months and me pushing all the way to get him seen

      ,no body goes from 16 stone to 8stone 10 with there being nothing wrong, but i had a terriable fight, and it was an awful time for travis and me i hated to see him suffer.not being able to eat anything but creamed cheese and yogaurts

      and i would have totaly freaked if i had to have it done, by the time he had . and recovered ,the funding had been cut ,and he wasnt given a place, i was so bloody mad , he would have grown up a lot and would have been able to work and lead an independant life .now it looks like he will just be a burden on the state. how is that best for him or the state.

      by the way travis is big built and 6ft 8in . now thats a novel .

      if i was you i would be searching now for special needs collage for your son , because other wise as soon as he leaves school they will forget about him.   my email is . the i in tina is a number 1. tian is my sprirtual name dont no if i told you . if you contact me thru my emails il give you my phone number a chat is some times better. esp if you think your the only one out there struggling . blessings tian x

      Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service. The quickest way to do this is click the envelope under the user in question's name.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • tiswas24537
      tiswas24537 dana32898

      Posted

      hi have replied but because iv included my email address they have stopped it. what a pain, apparently you can private message but i cant find any where on the page that says how to do it.  tian x
    • dana32898
      dana32898 tiswas24537

      Posted

      Hun I understand what your going through..its a constant struggle isn't it... my son i never know how he's gonna be from one day to the next. I had so many problems through primary infant school they just left him and left him they held him back a year and never told us they were doing it so he got into a right state where I just said I'd home teach him...In the end I contacted the outreach autism team I sorta knew how the system worked..having worked has a teaching assistant myself and thankfully things improved slightly but luckily he's in main stream school but they have excellent support but if something out of his routine happens I can't get him to school he gets terrified that he shakes..and can become ill..and you are so kind letting me have your email fone number just gotta find it now lol..you are a truely kind person..x
  • JulieBadger
    JulieBadger dana32898

    Posted

    hi Dana,

    The best thing for you at the moment is to remember you are in a flare up.  Yes flare-ups last different lengths of times but they do calm down.  It will get better between the flare-ups.  Lessen the commitments if you can whilst you're in this phase.  The relaxing CDs are a good idea to calm you emotionally / mentally and physically.  Take one day at a time.  If I think of the whole week and the number of commitments I freak out, thinking can I handle them?  Sometimes I have to just think of the morning  and then we get to lunchtime and I then think of the afternoon.  Definately not how I used to be.  I was an organiser, I liked to plan and be spontanous.  Now that over whelms me and I have to just think about each day only.  Mainly because of how exhausting it seems.  It will get better x

    • dana32898
      dana32898 JulieBadger

      Posted

      Ahh thank you..you've given me a better way of looking at my week..I'm glad I'm not the only one I just get like you I freak or just  panick it just gets too much and the relaxation cd sounds good too like you i was always spontaneous and I was there for family and friends but  think iv got to change i havent got a choice and learn to plan my day better and not to commit myself too much..Thanks again x
  • Ech1ck
    Ech1ck dana32898

    Posted

    Ah bless you. I totally empathise with you. I know it is really scary when you start to feel that you are losing yourself I was exactly like that. The best thing for me was to focus on one day at a time and learning to be kind to myself so I didn't put too much additional pressure on myself. I have recently seen a nutritionist and been recommended to take part in The GAP diet which is specifically for people with joint, muscle and IBS challenges. Start with the Intro GAP diet only ___________ I have not started it yet as I broke my ankle a few weeks ago so as impatient as I am I have taken my own advise and put it on the back burner until I am back on my feet - literally. The other advice is to only surround yourself with supportive people, eat well, watch funny films/TV programmes and laugh as much as possible. So if and when you feel up to it do get your hair done and ask for help when you need it i.e. school run etc - there are kind people out there and I am sure you would do the same in return. We are all individuals so the journey is about finding what works for you. For me heat really helped with the pain so I pestered my G.P. to refer me to my local hydrotherapy centre in my local hospital and that really helped get me mobile again and deal with the pain. Please feel free to ask any further questions, knowledge is what will get us through. :-)

    Emis Moderator comment: I have removed the link as it was to a site unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

    http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

  • Ech1ck
    Ech1ck dana32898

    Posted

    Also the GAPS diet has been known to help children with Autism too - 
    • dana32898
      dana32898 Ech1ck

      Posted

      Ahh thank you..your so kind and I will follow your advice i think surrounding yourself with supportive people is so important ..Some of my works colleagues at the moment are missing me( im having a flare up) say things like are you better today but it's not they're fault bless them but they don't get it..I do a Manuel job and I am struggling I work for a day then I'm ill for 3 days..its getting me down..also the gap diet sounds very interesting specially if it could help my son and I agree  I'm having hydrotherapy at minute and yes it does help..Thank you again..
    • Ech1ck
      Ech1ck dana32898

      Posted

      You are more than welcome.

      I think we are very similar as I too had a manual job and I would really work hard at getting well to only then work one day to have 3-7 days off in agony. My company chose not to support me and forced me to accept redundancy which considering my role as a Health and Fitness Manager was primarily supporting the local community and council with proactive and preventative health care really really got to me. You are the only other person I have spoken to that is also doing hydrotherapy. It would be great to keep in touch and see how you and your son are doing in the future. Again all the best.

      E 

    • JulieBadger
      JulieBadger Ech1ck

      Posted

      I did Hydrotherapy through the hospital but had to stop after 4 of the 6 sessions.  The intensity of the 20mins per week was too much (I also have Fibromyalgia).  After the 4th session I was so shaky I couldn't get back in my for 30 mins after the session. 

      I have a hot tub at home which you can swim in and the warm water really does help with the bubbles.  I really should make more time to go in it.  I found it a problem that you could only sit or swim but I've just found a float which I'm hoping to lay on.

      So for me the Hydrotherapy didn't work but relaxing in the warm water does.

      Hope the Hydrotherapy works for you both.  I would certainly recommend a hot tub session if you can get access to one.

    • Ech1ck
      Ech1ck JulieBadger

      Posted

      Thank you Julie.

      Yes I was like that with the hydro too so they cut it down to 5 -10 min max sessions otherwise I was too tired to get dressed. I then arranged for hospital transport to collect me straight after. The hot tub sounds great so I will add it to my wish list :-)

    • dana32898
      dana32898 Ech1ck

      Posted

      Ahh it would be lovely to keep in touch and it means a lot to chat to someone who's similar...how awful for you not to have the support.. iv come to the decision to leave work. I am so terrified of being ill on the night I'm in.. I work 10pm till 3 am heavy duty housekeeping..sauna poolside..showers just can't do it anymore...and my son needs a mum that's not in bed constantly...
    • tiswas24537
      tiswas24537 dana32898

      Posted

      god no wonder your ill thats very heavy work and in hours when your supposed to be asleep.

      maybe your improve if you can get back into a good sleeping pattern .lets hope so . regards tian .north yorkshire.

    • Ech1ck
      Ech1ck dana32898

      Posted

      Ah thank you.

      I was gutted when my company let me go , especially as I was in a post for supporting everyone else with proactive health care and it really frustrates me in the health industries (which you are part of too with the heavy duty housekeeping) it is very contradictory as a whole for staff versus clients.

      I admire your strength in that decision and it sounds like a great step in getting your power back for what is right for you and your family.

       

    • dana32898
      dana32898 Ech1ck

      Posted

      That is really awful for you not to be supported at work and so contradictory for the profession you were in . promoting health and support..

      iv had a update on my circumstances I have worked for the hotel for 4 years as a zero hours being promised a contract it never happened for any of us so when I was sick i never got paid!!!

      Have had talks with my supervisor and they will keep a place open for me for up to 6 months to a year if I can control it beta..which at the moment isn't lookin good but you have to take control.

      Also it does effect your family....but Iv got to be honest going from having money to no money I'm struggling with that worry now...can't win.

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