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Lack of sleep is killing me

Posted , 3 users are following.

kimhawkstone39
kimhawkstone39

Hi I have been diagnosed with Fibro and get the pain, twitches etc. I am loads of medication but the hardest part for me is the constant worry feeling and lack of sleep. I have tried everything to sleep but it isn't working. I feel so down and somedays so lonely with it all I know lack of sleep does not help. I walk with a crutch now I have other health issues to thanke to specialists who kept saying all I had was migraine I went on to have 2 mini strokes due to other health and for years i have asked have i got fibro to be told too young and now i am 44 they said yes. Please give advise on sleep and lonely feeling etc the list goes on kim

0 likes, 23 replies

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  • hope4cure
    hope4cure kimhawkstone39

    Posted

    Misdiagnosis is always very upsetting. It leave s feeling that health professionals don't care enought to find a diagnosis and help with a health plan to help get u back on UR feet. 

    Mind u as life changes so do our expectations of professionals. There are always the few that can tolerate a patient who does not genuinely respond to treatment. Some do listen some do not.finding a physician who will take on a challenge and work with u is imperative. As u dr. This.. Make it clear that u r willing to follow instructions ...meds report back if they do not help. This is critical in UR treatment to have a physician who can treat u and u feel confidence in the treatment... 

    FM is a total body issue mind and physical treatment goes hand in hand. Ask for PT. 

    These specialists can help u get UR legs back & UR confidence. Depression must be treated and UR dr can refer u to a good physic therapist to help with UR outlook, accept UR limitations and find a place of comfort within urself.

    these three treatment plans work hand in hand over a few weeks UR outlook will rise up.. U will begin to regain confidence and relearn how to do things every day things. 

    And the meds for a good nights sleep temporarily will free u to the core to begin to live again. A whole full life in different strokes and with enthusiasm that this too will pass.. Using time every day to accept UR limitations and trust urself and knowing UR treatment will work to give u peace, living to the best u can with all the happiness and freedom knowing u r doing better and u r determined to respond to treatment . Keeping a journal on good days and bad days will help with UR treatment program..

     

  • kimhawkstone39
    kimhawkstone39

    Posted

    Thank you for your help I am seeing my Doctor Monday so I will talk to him about these options Iit is such a hard thing to cope with if you have worked all your life then suddenly you can not work and end up on pip etc thanks again
  • shelagh6
    shelagh6 kimhawkstone39

    Posted

    Hi Kim, 

    the sleep issue is nasty, try to change your nighttime routine, maybe read a book before bed? Try not to spend time through the day in bed, only go to bed at night. I turned 60 this year, can't believe it I still feel young mentally. I was diagnosed by an excellent Rheumatoligist a long time ago but probably had fm longer than that. Various doctors have been supportive although one wasn't at all. . 

    You don't say what meds you are on, have you got or had Amitryptiline? That should help with sleep as well as pain. My latest attempt at a good nights sleep is a negative ion bracelet, it works, that surprised me but I also bought one for my husband and he is sleeping better too.. I should say my husband is 43, a chef, in reasonably good health but hasn't been sleeping too well. 

    Lastly, have you been referred to a Rheumatoligist? This is a must! I don't know whether you are in the UK or somewhere else and if in the UK whereabouts, if you are near me I can recommend a Rheumatoligst. I've also discovered there are support groups in the UK, I haven't been to one but am thinking about going now I've retired and have some spare time.

    Anything you think I can help with please feel free to message me. 

    All the best Kim, you are not alone.

    Shelagh,

    • kimhawkstone39
      kimhawkstone39 shelagh6

      Posted

      Hi over 4 years i have had every pain killer going including Amitryptiline. I am on Pregabalin max dose, prednisolone 5mg,Lansoprazole , Furosemide, clopidogrel,tramadol,duloetine and Azathioprine for Vasculitic disorder which caused 2 mini strokes. I have a fab Rheumatoid specialist in Hollinswood Telford. After every expert going over 4 years who kept misdisgnosing they eventually put me under Rheumatoid Doc, where in the uk are you. Your message is so helpful and lovely 
    • shelagh6
      shelagh6 kimhawkstone39

      Posted

      I'm in Cumbria, if you're ever traveling up the M6 you'll have to drop in, we're minutes off junction 38. I've had years of experience with fm and have learned ways of coping with all the odd things that happen with this strange condition. I'm seeing my new gp on Tuesday because I keep falling over, I don't know whether he/she is going to be supportive or not. 

      I hope you find ways of coping too. Feel free to message me any time, I may not answer immediately but will eventually.

    • tiswas24537
      tiswas24537 shelagh6

      Posted

      hi thanks for reply and invite i live in filey north yorkshire so its not a million miles away.[ i feel like i want to say take more water with it] but i do have a wicked sense of humour, but i do no its not funny.  i fall easly all i need is a bit of gravel under my shoe and once i start to go thats it. its really annoying i had being dependent on others ,and the other half dont get it .which dont help.

        i try to watch a lot of comedy because i love to laugh and i love a full range comedy ,stand up , vintage, sitcomes. thank god i do have that laughter gene if i didnt i think with the amount of pain i have been in at times i think i would have gone mad

    • shelagh6
      shelagh6 tiswas24537

      Posted

      I have a wicked sense of humour too, not many people get it at first so they either get used to it, laugh or leave me alone! Taking more water with it is fine you can say that. I love to laugh too, I get some hilarious clips from Facebook friends all over the world. I think what keeps me going is my dogs, they're always there for a cuddle, and they make me laugh.

      its funny with this falling over thing it seems to go in slow motion and I can't do anything to stop it, seeing the doc tomorow. It did occur to me it might be an ear thing as I'm going deaf too! Falling apart! 

      My husband is fantastic, he does all the cooking, he's a chef, he will usually be happy to do anything I ask unless he's really tired but then I wouldn't ask anyway. 

      Laugh all the way!

    • kimhawkstone39
      kimhawkstone39 shelagh6

      Posted

      Hi I am going to Argyll in August for a hol not sure how close that is but it would be fab to come to you sometime and chat thank you for the lovely invite kim
  • tiswas24537
    tiswas24537 kimhawkstone39

    Posted

    theres nothing more lonley than pain , it cant be seen ,and know one can understand that our pain is all over, not to mention a whole batch of over problems that go along with it.  lack of sleep will  cause depression i know i used to  suffer badly with lack of sleep

     because the worst of my pain was in my upper back , ,

    since iv been using my pain oil.  rhemotiod rapid relief oil. and magnesium oil  both easly available on the net , i sleep more, because i have less pain , if you can get in to a bath, buy some magneisum bath flakes  add to bath and soak in it it will help you sleep.

    works a treat .to relaxyour muscles .or buy a spray on magneisum oil and rub it in to your worst areas to relax your linmbs you will sleep i always do ,

    i wish i had kept it up the first time i tried it, but i was looking for a magic pill to make it all go away, so i spent a fortune trying other things only to come back to using magnesium

    , and the new product. pain oil that i found . DONT FORGET if you feel a lone in the night and the pain is driving you mad , the samertians are always there, they cant do much but sometimes just knowing someones there to talk to is enough to get you thru .hope iv been of some help

    • kimhawkstone39
      kimhawkstone39 tiswas24537

      Posted

      Hi thanks for the helpful message I will try the oil I have alot of pain especially in my lower back which bugs me, it is a lonely illness as people do not like to listen
    • hope4cure
      hope4cure kimhawkstone39

      Posted

      Kim do u know what's causing lower back pain. I have the same issue. Hot tubs anti inflam drugs and massage help so much. The best treatment is rest.

      PT teaches ways to build muscle and tendon strength to support the back and body core. Slowly stared this in baby steps. Now I can do more than I could in years. 

      Maybe helped u too! I glass of Chocovine at night is a good relaxer with those tight muscles and disc issues. L-4& L-5 are fused. Arthritis , spires and spondylitis...with scoleosis of the spine.. YIKES SOUNDS crazy I guess when I was younger I thought I was invicidable.

      Now just trying to stay mobile...

      (( hugs))

       

    • shelagh6
      shelagh6 hope4cure

      Posted

      Hi, there are a couple of things I wouldn't necessarily agree with, firstly rest is great but it is important to keep active too and secondly massage is a tricky one I was advised against any type of massage/manipulation of my back due to the damage to my spine.  With a lot of things in our condition I would advise having a word with the doctor first as there appears to be a lot of underlying conditions present with everyone I've spoke to.

      i know what you mean about being invincible, I used to teach horse riding and bought problem horses, sorted the problems then sold them on, I had a lot of broken bones from various riding accidents. I'm pretty sure, if my mum was still around she'd say 'I told you this would happen but you wouldn't listen'.

      all the best,

      Shelagh

    • kimhawkstone39
      kimhawkstone39 hope4cure

      Posted

      The Fibro causes my back pain and I try to get through the pain barrier but end up regretting it big time I will try what you suggest God this illness is a nightmare 
  • shelagh6
    shelagh6 kimhawkstone39

    Posted

    Hi Tina,

     I'll try the oils too, thanks for the suggestion! Must admit I have phoned the Samaritans a couple of times in the middle of the night but they were only interested if I was contemplating suicide! 

    Regards

    Shelagh

    • tiswas24537
      tiswas24537 shelagh6

      Posted

      i know what you mean about the samertians i think its a standered question , to cover them self ,  but iv spoken to them many times they do talk to anyone who are lonely . iv even visted them at there office at midnight with my daughter . just remember that there there .
    • hope4cure
      hope4cure tiswas24537

      Posted

      Tina.. I totally get it... It's so normal to have all the feelings u have expressed in this forum... This is good that u can put UR feelings into words and don't bottle them up.. I have such a horrific time sleeping most of my life... Sleep comes in 2-4 hr increments and thats it if I am lucky. Its always like a cat nap hear everything. I started to wear silicone ear plugs helps.I hope UR search for the right meds never stops. It's like walking a tight rope.  PTSD and pain is a big issue for me..

      I appreciate all UR contributions..I like u have struggled with this until I could stand on my head and spitt rubber nickels and no one still understands.

      (( hugs))

    • tiswas24537
      tiswas24537 hope4cure

      Posted

      i no its so unfair , i wouldstand i a bucket of horse dung on my head if it got rid of this dreadful condition, it impacts on everything, your family life sex life and social life, i am always falling a sleep it drives me mad iv fallen a sleep standing up just for a few seconds but its a bit of a start.

      i have a perment tickley cough which drives me , my skin blisters easy

      and the sweating , so although iv got for the moment a handle on the pain ,allowing me to sleep , better , thats about it i still have the other problems , talk about a 101 dalmations , this condition seems to have a 101 symptoms

    • tiswas24537
      tiswas24537 hope4cure

      Posted

      i no its so unfair , i wouldstand i a bucket of horse dung on my head if it got rid of this dreadful condition, it impacts on everything, your family life sex life and social life, i am always falling a sleep it drives me mad iv fallen a sleep standing up just for a few seconds but its a bit of a start.

      i have a perment tickley cough which drives me , my skin blisters easy

      and the sweating , so although iv got for the moment a handle on the pain ,allowing me to sleep , better , thats about it i still have the other problems , talk about a 101 dalmations , this condition seems to have a 101 symptoms

    • hope4cure
      hope4cure tiswas24537

      Posted

      Having chronic pain is so difficult and it is difficult to describe to our doctors just how we really feel. They need to know how we feel in order to give proper treatment. U can google a couple of sites that describe the levels of pain. Some have pictures of faces that show the pain you are in. There is also many links on how to keep a pain journal . Using these tools can help you and your doctor in getting good treatment for your pain.
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