First post on here

Hi, I'm new to posting so being my first post, I will quickly explain that I have had fibro for probably at least 17 years but only actually managed to get diagnosed for the first time this year! I have had test after test after test and they have always come back clear so last year after really pushing my GP and seeing several different departments for more tests at the hospital rheumatology finally told me I have 16 of 18 points and that I have fibromyalgia also I have a severe vitamin D deficiency which they are saying makes the pain worse, I not convinced that is all that I have wrong but all my tests are clear so that is the end of the investigation into my pain according to rheumatology.

I have also been diagnosed with depression, panic attacks, anxiety and 4 years ago hyperventilation syndrome!

From everything I have read and experiences from my aunt who also has fibro and was diagnosed several years ago I am under the impression that they are all linked and that the specialists blame everything that occurs after diagnosis on fibro!

I've been told by many doctors that antidepressants are supposed to help control the nerve pain, however with the 5 different types they have prescribed for me, none of them have worked but after being prescribed DHC Continus 60mg several years ago for pain I have found that this does help take the edge of the pain but does not in anyway take it away but just makes the really bad days a little more bearable.

Does anyone else suffer major sleep problems with fibro? Not specifically from pain but just not being able to sleep!

Just thought I'd share a little about my experience of fibro as I have now accepted that this is what I have and that I just have to get used to it and live with it as hard as it seems there really does not seem to be any long term help from specialists other than the usual eat well and sleep well to lesser the pain and fatigue.


7 Replies

  • Hi Louise and welcome to the forum. You will find that we are a friendly lot and someone will be along soon who is better than I am with links and such.

    I have was diagnosed around a year ago and like you my Aunt suffers from it too. I think it helps when you can come to terms with how your life is effected and make the necessary changes to accommodate it (not quite there yet). I have been put on Amitriptyline to help me sleep although it is useless for pain during the day :) but I do at least sleep which to my mind is half the battle.

    I hope you can find something that works for you :)

  • Hi Louise, welcome aboard, I have had fibro for 18yrs. Sleep you say what is that ( lol ) I use to sleep all the time but about a 1 ago I stopped sleeping I only sleep a max. of 2-3 hrs. sometimes I only sleep 20 to 30min for weeks. I have been on different sleep meds. and had sleep studies done the result was RLS and pain even though I might not awake in pain my body constantly readjust when the pain starts every 20 or 20mins and after 2-3hrs. I'm woke. So I never get restoratative sleep which keep me in a flare-up. I also have a vitamin D deficiency. :) xxxxx

  • Hi Louise

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I genuinely hope that you find the forum useful, informative and loads of fun!

    I have pasted you a link below to our mother site, FibroAction, and it contains loads of useful Fibro information:

    I always say to members that we are all unique individuals and therefore what medication works for one may not necessarily work for another as we all react and respond differently to both our medications and our illnesses.

    I genuinely look forward to bumping into you around the forum.

    All my hopes and dreams for you

    Ken x

  • Welcome to posting on the forum and telling us all about yourself and your situation. Yes I think alot of us on this site suffer with sleep problems either sleeping to long and always feeling fatigued or like me and you rarely getting more than a couple of hours sleep and sometimes none. I have always been a light sleeper but since having this illness have been terrible. I have put it down to the continual pain and even if I get myself in a comfy position of course I turn over as I got to sleep and are woken up by the pain. I also think not sleeping makes it more difficult to stand the pain so it is a vicious circle we are in. I hope that you find some medication that helps you and if you do please share your experience as I for one would be very interestedx

  • Good evening!

    Since onset of my fibromyalgia in 1998 my insomnia has a life of it's own & my pain has high-jacked most of the rest of my life. However, I found an excellent psych program that taught me that to survive all this, with my sanity & my dignity in tact, it is me, myself, and I that has to take back control over what is within my power!

    There is so much that really is within our power too! What we focus on, what we do with our time, when we will pamper ourselves, when we will build relationships, how long we will release control to have a good cry & when we will take control back up again. What we will eat & who we will discuss our physical state with. All these decisions ARE under your control!!

    You see, it is in controlling the things that are within our power that we become more empowered. In releasing what is beyond our power we take even more control of our preventing much of our inner frustration with our circumstances & pain.

    Let me give you a practical example: I know I don't sleep much. Plain & simple, I can no longer control when I will go to I release that control over to my body. I don't fight with myself about what time it is or if I "should be" asleep. I choose instead to spend my energy on what I do focus.

    I built myself a literal 24 hr schedule. I consistently focus on stabilizing my life by controlling the timeframes in my day. Notice I did not says minutes, hours, or tasks in a day? Letting go of my "schedule" enough to only have a general routine of timeframes, gives me more control!

    If I am asleep then the schedule doesn't matter. I give myself permission to sleep whenever I can, for as long as I can. If I am just too fatigued to do everything in my scheduled timeframe then I leave some for tomorrow.

    My only three goals in life are taking care of my health, building my relationships, and getting just one thing done per day. My two "have to keep up with" things are the dishes & laundry. And I don't have to be perfect at that either!


    5pm - 7pm, every day:

    I choose to focus my time & attention on being with my husband. I focus on myself only to the point of checking how I feel to decide who is cooking dinner. It doesn't matter if I can cook dinner or if I can only help while he cooks because of my pain. It doesn't matter if during food prep time & dinner we both talk or if I simply sit on the sofa & listen to him while he talks. Heck, sometimes all I can do is lay quietly on the sofa while he cooks & then sit up just long enough to eat the dinner he made for us. My control isn't in how I comes from what I choose to be focused on, which is my husband & our daily relationship time. I don't allow these few hours to be about my pain, nor how tired I am, and not on myself.

    7pm - 10:pm: After dinner is our quiet time together. We usually hold hands or cuddle while watching TV or listening to music. This is so he can relax from his 16 hr day & unwind to sleep. Twice a month we go out to eat or to a movie. Whatever we do in this timeframe is done together. It is based around how I feel but the control remains mine in what I do.

    10pm: He goes to bed. If I can go to bed & sleep, great. If not, then I always get up, walk with him to bed, pull up the covers over him & kiss him goodnight. I know I am able to control my aches & pains long enough to do that one little, yet very loving, thing for him...for our relationship.

    10:15 - 2am, every day: I choose my distraction! Do I hurt? Do I know it is going to be a long night? Yes & yes. Still I control my focus. Because I don't enjoy making the next 8 hrs all about "trying to go to sleep" I choose to pick an active, but non-physically stimulating, thing to do. It may be watching something exciting on TV, being on the computer blogging, or making jewelry.

    2am - 4am I re-analyze my body. If I can sleep great. If not, instead of worrying about that clock I choose something very relaxing to do. Watch my art, history, or science channels on tv, draw, or read. Something to engage my mind & distract me from my pain but something at a slower pace, just in case I can get to sleep.

    4am - 6am I re-analyze my body. If I can sleep, great. If not I choose something even more relaxing to do. It can be bible study & prayer, a hot bath, or meditation.

    6am - 8am: I re-analyze my body. If I can sleep great. If not, I put on an old movie that I have seen so many times that I can lay with my eyes closed & just follow along

    During the movie I do biofeedback exercises (relax body one muscle group at a time).

    8am:- 10am: I kiss hubby & send him off to work. I crawl in bed regardless of how my body feels & actually try to go to sleep. I do this at this time because my husband is not in bed for my restless legs, tossing & turning, and spasms don't keep him awake...after all, he has to work. If I sleep, awesome; I sleep as long as I can.

    10am - 2pm If I can't sleep, I get out of bed & start my day just as if I slept. I eat breakfast, rest, put dishes in dishwasher, rest, put in 1 load of laundry to wash, rest, put that load of laundry in the dryer, rest. Put away that load of laundry, and rest. (Testing is in living room. If I fall asleep during this time, awesome. I sleep as long as I can.

    2pm - 5pm: If I am not asleep I get out of bed. & take my bath, rest, get dressed, rest, do some correspondence by text, email, or snail mail.

    5pm: When my husband arrives home I turn my focus back on him & our relationshi. .

    What I do in my daily timeframes get mixed up. One day it may be laundry, another dusting, an another clean to bathroom. The point for me is that by keeping to my timeframes I am not victim to my body!! I am in control of what I do.

    I pray that your life circumstances allow you to recognize that no matter how you arrange your schedule/timeframes/goals you ARE in control.

    God Bless

  • Yes Sweetheart. I think insomnia goes hand in hand with fibro. I had to get my doctor to give me something to help me get to sleep as I couldn't get there on my own. Hope you are feeling better today!!! Hang in there Honey. xxx Mitzi

  • Hi all,

    Thank you for all the replies :-) it's nice to hear from people with the same difficulties and to know that it's not an illness that's all in the head which some doctors seem to think!

    I've had a look on a few sites and this seems to be the friendliest and most inspiring site when it comes to dealing with the everyday challenges that fibro presents!

    What I'm still very unsure of is if all the pain I get in a daily basis is all related to fibro, all my bloods, MRI, scans and x-rays have come back clear so far but on a daily basis I can have pain in almost all joints at some point during the day or night with certain joints being painful all the time.

    As an example I can walk from my kitchen to my bedroom and get pain in my knee, then hip then back to my knee then my back, does this seem to be the norm for fibro?

    Also my neck and shoulders hurt all the time, mostly an ache that just won't go away but sometimes feels like a knife being twisted in my shoulder joints, again do these seem normal?

    I'm just trying to get an idea of what is pain due to fibro and what might likely be pain from anything else so any info would be greatly appreciated

    Thanks Louise

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