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I have had extreme pain for as long as i can remember and my Dr.s could never figure it out. so they did the whole which pill will work. I can't eben count how many they made me try  and how many bad reactions i had. Some almost mad me hospitalized. I live with my pain everyday, some days i can't even dress my self or make my own food. I feel like i'm someone's baby again. When i was almost 22 they finally figured it out that i have fibro. I don't know how to live knowing this pain will never go away. I don't know how to live knowing i will never be ok again. for the longest time i was hoping it was fixable but its not and im just getting worse... my mom has it to and she is even worse ... i see my future in her and i am terrified to live. i am on almost40mg of oxy a day and pot... with fibro came adhd and a severe generalized anxiety disorder.... dose anyone know any tricks to help the pain and make things just a little better?

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  • Posted

    Hey hun,

    Welcome to the site - the Fibro friends here will be helpful and supportive so don't feel alone, we all suffer and somehow we all get by!

    Please don't give up on life based on your Moms experience with Fibro, I know its hard to sit and watch someone suffer (especially when you are hurting too) but you need to get some coping strategies in place to make things bearable.

    I'm 36 and only diagnosed a couple of years ago but have suffered for years with many ailments, I was the sickly kid who never went to school, the person who is always in A&E with some disaster and now I've just added another ailment to my long list.

    Firstly you need to think about your pain and what makes it better / worse.

    Do you have a hobby or distraction that helps ease the pain if only for a short while?  If you don't have something, find something - I love drawing but my fibro effects my fingers so I do a little bit or just doodle and often find the pain settles a little, a feel calmer and not so on edge.  

    What makes it worse, can you change it, can you control it?  By this I mean are there meds that take the edge off, is there a time of day you feel worse, can you alter work patterns / studying around it?

    I'm writing this at 4am so I can tell you sleep is a real issue for me, I'm so tired yet can't sleep and I know this will make my fibro worse.  If this is an issue speak to your doctor about medication to help sleep as this can be a real benefit to how you cope with the pain during the day.

    I totally get your fear and frustration about being a "baby" my partner has to cut my food up, put my shoes on, help bathe me - all the things you want to be doing for yourself but sometimes you have to accept that it has to be done - its hard, humiliating to begin with I suppose but now I just take one day at a time.

    You mention you use pot - I can't condone the use of pot as I've seen the negative effect it has had on friends and family.  Yes it takes the edge off and removes you from the situation for a time but the mental repercussions seem to be a big negative - I've seen intelligent people turn into paranoid, anxious, stressed messes, I'm not saying this is you, just be careful its not adding to the issues instead of helping.

    I wish I could give you a magic pill, I wish I could tell you it will be OK but it is a struggle we all have day to day and some days are better than others.  Stay strong, get involved on here and talk it out, we all want to help each other get through this xx 

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    • Posted

      thank you for the answer and i know people don't agree of the use of poy but the only other med that works is oxycodone ... i stoped pot cause medical pot is very expensive, so i am just on oxycodone now, i try to take breaks from it so i don't get addicted to it but its hard. and with anxiety i am already a mess... everything makes me worrie and stress... i have been trying to get over it but i still even have trouble calling to order pizza... i crochet to take my mind off it but my hands are also affected so can only do that for a small amount of time. I live with my boyfriend and its hard to keep up with my half of bills ... cause for me even a part time job is hard.. i can't stand for long and i used to work at mcdonalds but they treated me like crap ... they made fun of me... called me useless and i had a manager push me, which no one believed cause she was well liked... so when i could aford to i left . i am at metro now but its getting extremely hard to hide my pain... i am afraid if they find out they will do the same as mcdonalds or fire me. My boyfriend has read about fibro but dosent understand what its like 
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  • Posted

    Hi noEnd

    You are not alone and never will be.  This forum has the best community support for us all, and everyone here will share advice and will have a high or a low moment but we all do generally understand.

    As Clurbur as said that if you have a hobby or something that makes you happy, you need to be doing that and surprisingly when we don't even realise it the pains are a distant memory for a short while. Enjoy the good times and staying calm and positive is the way forward.

    I was put on a whole lot of meds at the start of my pains and as the the doctors couldn't specify or identify the pains, it was meds after meds. I soon learnt that the meds were not the answer for me and started to find alternative therapies. Years have gone by and have had two children over the years and life hasn't been easy.

    I was only diagnosed with Fibro Aug 2014 after suffering with pains for over 20yrs. I didn't know much about Fibro but since diagnosed, I have had Cognitive Behaviour Therapy (CBT) which helped me imensely with the mindfulness of my thought process. I joined this forum in March 2015. I have also started Ayruvedic herbal treatment. What I can say is that these last few months has changed me as a person and the pains are not as bad as they were.  Being positive, calm and dealing with one day at a time and also learnt to say NO has really given me my life back.

    So I will say to you one day at a time and remember you are not alone.

    Gentle hugs wink x

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  • Posted

    Hi noEnd:

    I take Epsom salts baths, which helps my achy joints, but also relaxes my mind ( especially after a horrible day).

    Has your drs referred you to physical therapy & what would help soothe your pain ?? Pills just temporarily mask it thats why, I have been trying things & to get to the root of my areas of pain.

    You have to be your own specialist since you know your body & pain better...I know its HARD, but you are one that has to pursue for your Health & Mental well- being.

    Success wishes & keep us posted on your health.

    Smiles & Giggles,


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  • Posted

    Hi NoEnd

    Some days the pain may well go away and that is the day when you do more but then have to pace yourself so the following day it doesn't catch up with you  again. Baths in epsom salts will help.  Positive thinking such as mindfulness or in my case hypnotherapy did  help.  I rarely take pain killers as the side effects are even more awful than the pain sometimes.  I use bio freeze gel for the aches and pains and stiffness and a shed load of supplements but no drugs on a regular basis.  I sometimes use a lavender bag which is put in the microwave to heat - its great over the shoulders.  Stroking my dog also helps for some reason. In the early hours of a sleepless night you will find me writing verses to bore all the fellow fibro folk on here.  If you can bear it take a look it will help to know that others are in the same boat.  You will never be alone if you keep logging on to the boards here. The lovely folk on here  have been wonderful for me.  Chin up and any time you need a friendly word think of the folks on here.

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