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Fibromialgia feeling alone and struggling!!

Posted , 5 users are following.

victoria63790
victoria63790

Hi. Ive been diagnosed with fobro just under two years ago after going to the doctors backwards and forwards with variois ailments!! Trouble is I am feeling alone now and fed up with the constant pain and various symptoms!! I have 3 kids and a boyfriend but I feel like I'm not myself anymore I hate the painkillers and the anti depressants they give you as I refuse to take them as im not depressed! !! Can anyone help me understand this mess!! 

0 likes, 14 replies

14 Replies

  • grahammolyneux
    grahammolyneux victoria63790

    Posted

    They should explain the anti depressants properly which they failed to do with me to start with. They prescribe amitryptalene as a muscle relaxant to help sleep. It is not an antidepressant in this case.

    I refused to take it because they failed to explain it to me . if you do try it only take it as  your night time message.

    I hope that you find your not alone by coming to this forum as it has helped me understand some things. I have written down each symptom and ticked them off to try to get to the bottom of why I am in so much pain.

    • victoria63790
      victoria63790 grahammolyneux

      Posted

      I have tried amatryptaline and nortriptaline (spelt wrong no doubt!) Both made me more dopey and I felt sick constantly! Not good as I have a 2 year old at home with me to look after!

      So I stopped taking them. They have prescribed me anothet one which I haven't tried yet as I am a bit wary of giving another one a go.

      I understand they are a muscle relaxant but on a bit a google research I found that they don't seem to be helping people that much plus you cannot drink alcahol on them and when I am not on my painkillers I like ti have the odd jd and coke!!

      This has been a real pain so to speak for me also as I haven't been able to go out with my other half and my friends like I used to before and I am so fed up of saying o cant go somewhere because I am so achey and tired and on codine!! 

      This is making me feel like I am not myself as I used to love going out from time to time as being a mum of 3 you need time to relax and be yourself dont you?

      Everyone is just carrying on around me and I feel so useless. I try to keep up a lot of the time but then im shattered. Because what I have is an invisible illness a lot of the time people just don't understand or just say its in your head but that just makes me feel worse.

      I was hoping that I could find peole that would make me feel that I wasn't so alone and people are dealing with the same as I am.

      Thank you for your reply. X

  • airyfairy85
    airyfairy85 victoria63790

    Posted

    Dear Victoria,

    I understand how you feel lonely despite having a family around. Fibro is an invisible illness and people around us don't always understand how we feel. There are things we can do to help the symptoms though. Graham is right about the amitriptyline -  if this is what doctors suggested you take - it is an old-fashioned anti-depressant but if used in low doses, it doesn't treat depression but can help with sleep and other fibromyalgia symptoms. I was recommended this also. However, I've decided not to use drugs unless I really need them. If my symptoms get worse I will take them though. I manage the symptoms at the moment with yoga, walking, and swimming. I think stress is the worst agravator of my symptoms, so when I notice myself getting tense I try to remember that what I'm worrying about will sort itself out, have a cup of tea/watch a movie. It's not easy though!! Since I was diagnosed my symptoms have improved a little. Do you do anything to manage yours? I think we have to take control of this illness or it will take control of us. I think a lot of people take supplements especially magnesium or vit D.

    Hope you feel better soon x

    • victoria63790
      victoria63790 airyfairy85

      Posted

      Hi. Airyfairy85.

      Thanks for your reply. 

      I walk everywhere which im not sure is very good but I don't have much choice because I cant drive but its exercise I suppose.

      I try to pace myself everyday which ive found is the best thing to do and I try to avoid things which I think will make me worse. 

      I have tried bath salts for muscles which helps a little bit not sure if its them or the warm water though but at least they smell nice!!! 

      Maybe I should try yoga which you said you use see if that helps. I am open to anything to be honest as I am so scared of this getting worse especially as I have the kids to worry about. 

      How do you feel from day to day? I am at home at the.moment with my little one but am wondering hiw it will affect me work wise when I go back? 

      Thanks for your help. Hope you have a good day x

    • airyfairy85
      airyfairy85 victoria63790

      Posted

      Hi Victoria,

      It must be tough managing with children. I am getting married this year and really want to have a baby but am so worried about how I would manage a baby. Really admire you doing that. Did you develop fibro after having your baby?

      I work full time but have good flexibility and work from home sometimes. I think if I didn't have the flexibility I would have to work part time. I think going to work helps my mood and takes my mind of the fibro though. Do you think you could work part time at least for a while?

      I have heard a few positive stories about fibro. I have heard of 2 people who have recovered from fibro. One of these is not 100% recovered but doesn't have the pain now, and has been working fulltime for the last 10 years or more. Also met someone last week at yoga who told me her fibro went away for 2 years although it is back now . These stories help me to be positive about managing fibro- that we do have a chance of improvement. I know this is not everybody but we can hope to be one of the lucky people who improve.

       

      I would really recommend yoga and swimming. Even if I feel bad before I go and don't think I have energy, I make myself go and am fine once I get there. The yoga is great for stretching out knots (I have pain in my neck, back, hips and wrist) and gently stretching them out really helps, but also teaches breathing techniques to help me relax/sleep. Putting my hand on my belly and breathing deep into my belly really helps me get off to sleep. The fibro effects my sleep, but this has improved (I don't know if it's due to the exercise or that I'm just worrying a bit less now). One warning about yoga - if it's too intense it leaves me with aching muscles for a few days - so be sure to start off with a gentle class if you're going.

      When I'm swimming it's the only time I don't feel any fibro pain at all, so I love it too. I know not everyone likes the water though. 

      ​Did you try ice/heat packs? They are also nice.

      You asked me how I feel day to day. I think my symptoms vary a lot and there are many. The worst one is the tiredness. Also was not sleeping and got headaches - but have managed to start sleeping better and headaches have disappeared. As you said you do, I try to pace myself - although it's not easy as I like to be very active. I used to cook a lot but now I usually just buy handy things for dinner - like pre-chopped veg. I get a bit stressed about social occasions as I know they will make me tired. I usually try to go out but don't really drink anymore (even though I used to love a drink) because it usually makes me feel unwell. 

      I really hope you're feeling better soon and know that you're not alone. Fibro is quite a common condition. I know of lots of people who have it. It makes life more of a struggle but it doesn't mean we can't live and enjoy ourselves!! Try not to worry :-)

      Take care,

      Marie

       

    • grahammolyneux
      grahammolyneux airyfairy85

      Posted

      I check the temperature of the pool before I pay to go in as if it is to cold I struggle in the water.

      When I go out on Social occasions I always have a look around to see if there is anywhere I can sneak off and lie down for half an hour just to relax and recharge the body battery.

      It is so hard to find a balance for how much you can cope with.

      I have been off work now for nearly 14 month's and I am now trying to retrain so I can try and get an office job but I think I would only be able to manage afternoon's as I am at the minute.

      One thing I want to clarify is whether this is a "condition" / "syndrome" / "Disease" I had a consultation in Liverpool with the Pain Clinic and the Dr called it a Disease.....?????

      fingers crossed for everyone as this condition is a mystery.

    • victoria63790
      victoria63790 airyfairy85

      Posted

      Hi. 

      I had my third child three years ago and started to develop symptoms during my pregnancy and after which I just put down to being pregnant and having a baby. My eldest is 14 and my middle one is 7.

      Hey are fantastic kids and they understand that mummy has cripple legs sometimes!! (Theyre words not mine!!) Ha ha 

      If you feel that you could cope with a baby then I would say go for it as it can be known so ive been told that having a baby can reset your body or something! Ive never understood how! 

      Congratulations on getting married I hope you have a lovely day and you don't get too stressed with it all. Ive been with my partner 16 years and even the thought of it stresses me out due to divorced parents etc!!

      I had viral meningitis about 9 years ago and it has been mentioned that that could have set it off but there is never any concrete evidence to suggest this.

      I am starting to notice that people on here are a nice bunch and they have helped me quite a lot over the past few days reading their posts.

      Xx

  • tiswas24537
    tiswas24537 victoria63790

    Posted

    nope i was the same yrs going back and forward to the doctors till i basicly diognosed myself and had it confirmed by the gp and a rhemotolgist.

    pain killers are only bandaids they will only cover up the pain . do some research on alternatives thru the internet ,as you can tell from this forum something differant works for everyone.  after many years iv found stuff that helps me its not the complete answer i am not cured but functioning most days.

     regards tina

  • Flowerlady
    Flowerlady victoria63790

    Posted

    Hi there....You are not alone, you have us all on here as we are all suffering the same as you. I were diagnosed 3 years ago and were given Pregabalin and Oramorph. I hated taking the Pregab, as the side effects were dreadful. I asked doc to give me something else he said no as the Rheumy put you on them. So I weaned myself of them, its my body after all. I still take Oramorph that takes the edge off 'sometimes'. I had to see Rheumy again and he sugested because I were only getting 2 hours sleep to try Dosulepin think thats how its spelt..it is an antid..I said I am not depressed, just sick of the pain. And he said I am giving it to you to take the edge of your pain and to help you sleep. And fair play, I am now getting around 5/6 hours sleepbiggrin so that helps. When I get up I do struggle to get out of bed, and the pain is still there. At the moment I am having awful pain in my knees, making it a real struggle to walk but I make myself go out walking otherwise I will seeze up! I hope your children will help you, if they are old enough. And I hope your boyfriend helps you out too..Good luck, keep coming on here its a great site..regards..Anne...cheesygrin
  • brenda59210
    brenda59210 victoria63790

    Posted

    Dear Victoria,

    I am trying to gather info on this condition which has affected me for a very long time. If I can recognise any links it might help me to get an idea of cause and effect.

    The main things I need to know are 1- were you taking any meds on a long term basis before this started?

    2)- did fibro follow on after some other infection, maybe some tie before?

    3)- Do you notice any change to the condition if you are in the open air rather than indoor?

    4)- have you tried elimination sugar and bread from your diet?

    If you don't feel up to replying don't worry. Anti depessants are often used for pain control.

    Best wishes

    Brenda

     

    • victoria63790
      victoria63790 brenda59210

      Posted

      Hi brenda.

      No u wasn't in any meds before I was diagnosed and I dont have any in tolerances that we are aware if  I was tested years ago and I have hyperactivity diagnosis years ago may I add!!!

      How are you doing now? 

  • brenda59210
    brenda59210 victoria63790

    Posted

    Dear Victoria,

    Thanks for your answers. I am asleep most of the time because I am hypersensitive to medication. Luckily(!) I'm older and don't have to manage children. I keep wondering what can have made me so sensitive and because my problems began after stopping a low dose of benzodiazepene(5 mg daily when required) I keep looking to see if other people's problems began after stopping a tranquilliser.

    If you keep reading these pages at least you'll know that you're not alone.

    I wonder what the medical profession is doing to get some better treatment  for us all.

    Try listening to Mozart 40. Very relaxing even if it isn't your musical taste!

    Wish you all the best

    Brenda

    • tiswas24537
      tiswas24537 brenda59210

      Posted

      I AM HYPERSENSISTIVE TO MEDICATION AS WELL

      doctors dont seem to understand why i dont want to take there pharm drugs . because i want some kind of a life . thats why .

    • victoria63790
      victoria63790 brenda59210

      Posted

      I keep feeling this too.not had a very good weekend so far. Feeling achey tired and emotional

        Keep crying as ive just got no energy but keep carrying on. My knees are also starting to ache quite a lot.

      I am gping to go and see my doctor this week again as I read on another page that some people have seen an occupational therapist and they've helped them with it. Going to see if I can be referred too.

      Poor you.  I am sending you hugs. X

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