CAN ANYONE HELP ME WITH TIPS PLEASE?

Posted , 9 users are following.

I have just been diagnosed with Fibromyalgia after suffering with excruciating pain for months-GP believes it was brought on following a course of intensive and quite severe hormone treatment i had in May last year when i was diagnosed with Adenomyosis.In August last year i started noticing paih in my joints,esp my kness,the pain then seemed tograduate through my body and i became sensitive to slightest touch,cant control my body temp and most days i am virtuallu unable to leave the house.Do any readers have any advice they could give me about how they deal with mornings-mornings are an absolute nightmare for me-i cannot move at all withour searing pain in my back,shoulders,feet,knees and esp my hands,which feel as if they are on fire!I have to have my poor husband or daughter basically haul me out of bed,and invariably i am screaming in pai.I cannot make a fist meaning i am unable to grab hold of anything to help pull myself up-is this common?Once i am on my feet i have to be held up for a few mins then i can shuffle to the loo etc-once ive been moving for a time i seem to ease up a little.GP had prescribed.Gabapentin initially which had no effect,then Amytriptiline which again was of no help at all-i am now taking TRAZADONE and am currently on 150 mg twice a day but ive only been on this dosage for a few days but so far im seeing no affect so im still relying on other pain relief.I really would be so so grateful of any advice you could give me as i am really beginning to feel i am reaching the end of my tether.

0 likes, 10 replies

Report / Delete

10 Replies

  • Posted

    Hi SHUSHI,

    Sorry to hear your joining our ranks as a sufferer.

    Gabapentin takes a while to get in to the system, about 3wks, and your currently on a low dose You don't list any pain meds but normally you will need these as well as the anti depressant and neuropathic pain meds. If you haven't been referred in the not to distant future ask about a pain clinic and pain management referral.

    FM can be controlled/managed but its a bit of a balancing act with most people on similar but different meds etc. As with all long term problems good eating and general health care are important not only for day to day but when you catch a cold or get sick and feel ill it effects you more as you are already feeling "delicate". Don't take this to all sound negative I have met several people experiencing long term pain and whilst its not easy you can get by quite well.

    Dont over do things and ASK FOR HELP FROM FRIENDS AND RELATIVES explain how you are affected and what they can do to help. Good luck Steve

    Report / Delete Reply
  • Posted

    Hi Shushi,

    I don't have much to say about the meds - I only take opiates for pain. However, I have some tips for general "maintenance". As Steve mentioned, your diet can make it easier, for me it means regular meals, five portions of fruit and vegetables, reducing sugar and eliminating gluten (which has helped me with Irritable Bowel Syndrom).

    Proper sleep seems to be also very important (good mattress, dark bedroom and natural bedlinen, duvets etc.) with regular hours of bedtime. I find a good daily routine very helpful (I work full time and I regularly drive to my clients' offices).

    I avoid unnecessary stressors, noise, strong smells and everything that causes discomfort. I'm not great at sports but I regularly go for a walk (4-5 times a week, an hour or two) and go swimming from time to time.

    I believe the key to managing FM is a healthy lifestyle, a purpose in life (Iike family, professional projects, cats...) and support network (family and friends to rely on when it gets difficult).

    I hope you'll find what works for you and you'll be enjoying your new lifestyle.

    Gentle hugs,

    Doris

    Report / Delete Reply
  • Posted

    Hi Steve thanks so much for replying to my plea for help!!My GP has actually taken me off Gabapentin and at present my pain meds are dihydrocodeine and Oramprph-ive been on Oramorph because of the pain the Adenomyosis is causing me-however i am gradually being taken off it as i dont like taking it and my GP has said it wont help the Fibro pain-he is trying to put together another pain relief plan .Ive been on the new med,TRAMAZONE for 3 weeks now and although its making my mouth very drt etc i am trying to persevere with it.GP has talked about referring me to pain clinic but as i live in a remote part of Scotland,this will more than likey take quite some time.I n your experience how did you or how do you cope with the mornings-they are the worst time for me-i am now finding after a couple of hours in bed i am completely unable to turn over or move because the pain is excruciating and it only seems to worsen as the night goes on,meaning that come morning,after having very little sleep etc i am screaming in pain and cannot get myself out of bed.O T have puta kind of grasp rail on my bed but i am finding this of no help as i cannot make a fist to grab the rail-I am trying to remain positive but im afraid to say im not suceeding terribly well!Thanks again for your advice,it really is very much appreciated,Shula
    Report / Delete Reply
  • Posted

    The mornings are always the worst for me I was like you at the beginning of my diagnosis but now I am not to bad ,I still can't move very good in the morning but I do some stretching exercises before I get out of bed go speak to physiotherapist they will give you details of all the stretches to help ,I'm not saying they will end all pain they won't but they get the muscles going a bit , it's like to doing a warm up before you would go to gym it took me a while to get this into my routine and at first pain got worse so what I did was do stretches one morning and if to much pain stopped and started followiNg morning ,it has taken about 4 weeks to get to the stage that I do the excersices and then wait a few minutes and then put my legs out of bed first and then gradually move rest of my body , I then sit at edge of bed till I can stand up I then do a few more exercises that they are all very small stretches ,go and get all this information from physiotherapist ,as I said it won't work over night and it's not a cure but it will help just preserver with them ,I have not been able to go outta much for the last 2 years but now I can maybe manage a couple of hours about twice a week and that's only to do some very light shopping ,I got paid off from my job so just trying to get my life back a bit hope this helps.
    Report / Delete Reply
  • Posted

    Hi Shushi..

    I've just read your posts...so sorry to read about your sufferings. I recognise many of your issues and can onlyadd my agreement to much of the feedback you've already received. Can I just add my encouragement that you persevere with the attempt to take small steps towards establishing gentle exercise on a daily basis. This may fill you with horror initially, but after dealing with FMS for over 10 yrs, and having taken every medication on offer, conclude that, for me, after quite a few failed attempts at going through the pain barrier (don't give up' it's worth it!) I began to feel more in control of the condition. Until then I felt 'it' was in control of me not the other way round. On the issue of meds. the only thing I take for pain control now is paracetamol 2 when I get up in the morning and 2 before bed at night.

    I do sympathise with you about the mornings, starting each day in pain and exhausted is horrible and so depressing and it wasn't until I got angry with the condition and the way it was ruining my life that I finally found the strength to fight it. Talking to others with the condition via a support group & joining a pain management programme helped me with the emotional and motivational impetus, but as this may not be possible for you geographically keeping on talking via the web may still help? Have you looked at FMA UK's website? It may help...Good luck in whatever happens next smile hope this helps a bit.

    Report / Delete Reply
  • Posted

    Try doing stretches in the morning in bed, while your laying down. Excerising will help with pain.

    Simple stretches are a great way to start! Being in pain makes you want to curl up and stay in bed, but doing that makes the pain worse. Try swimming or just walking but don't overdo as you'll be sore. Hope you find some relief! There's good and bad days don't push yourself when you feel good. There's something called the spoon theory, you only have a certain amount of spoons each day choose how you use them and if they are all used then you can't do it lol. Read it, it's great! http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

    Report / Delete Reply
  • Posted

    Hi I am new to this forum and needed some advice. My problems all started just over two years ago. My

    youngest daughter left for uni and my son (he was 26) moved out of the family home and I moved out of the

    area to live with my then fiancé. We married last July and this should be the happiest time for us both.

    Unfortunately18 months ago I started to have extreme muscle spasms in my neck, chest, arms and shoulders

    I have hadMRI's and ECG's amongst many other tests and have now been diagnosed with fibromyalgia. I am on just 600mg of gabapentin a day which is a fairly low dose and the last 2 or 3 weeks my muscle spasms

    have eased a little, well that is until my dr started me on a low dose of citalopram 8 days ago. My muscle

    spasm has increased a little, but my biggest problem is that I drop off to sleep quite quickly but awake about 3or 4 am and that's it I don't sleep anymore. I have a pins and needles feeling in he back of my head also. I

    am not sure how long I can get by on so little sleep and I don't sleep at all during the day. I currently don't

    work as I was a Cover Supervisor at a junior school where I used to work but when I moved from that area

    and with the onset of fibromyalgia and the pain that I am often in, my confidence is at an all time low. I am

    alone in the house most of the day unless I go to town or go for a walk which isn't much fun alone! I really need advice as to whether you think my insomnia will improve or whether to ask for a different medication. Sorry

    for all the detail but I wanted someone to look at the whole picture before forming an opinion, and thank you for taking the time and trouble for reading it.

    Report / Delete Reply
  • Posted

    It's all about medicine trial and error. And trying to be active in the day so you will be tired at night. Sleep is hard as you are in pain which makes sleep an issue. Taking the gabby at a different time maybe earlier.
    Report / Delete Reply
  • Posted

    Hi Shushi. Sorry to hear you are suffering so. I am exactly the same in the mornings and although I look forward to getting into bed at night because I cant sit watching TV on sofa any longer for pain ...I dread waking up and having to face the morning pain. I have to psyche myself up to put my feet to the floor. I shuffle to the bathroom like a ninety year old (seen some ninety year olds that look straighter than me ) and then coming downstairs is an absolute nightmare. I yelp and moan all tha way to kitchen where my meds are and gulp down two co-codomol, one prebabalin and collapse on the couch for at least an hour and a half until they kick in. My hands and fingers burn and are so sore and stiff I cant make a fist. I always have a blinding headache and my knees, ankles and back hurt ...oh and sometimes my elbows. Once I get back up as long as I dont sit down for any great length I can normally get on with things. All I seem to do is moan and groan to my husband bless him. I am also on Tramazadone at night and it also makes my nose block up and my mouth dry out but it does help me sleep. I haver to keep telling myself that there are people worse off than me with horrible diseases etc. but I must admit it doesnt always help and then the tears start flowing. I am sorry I have nothing constructive to tell you but as you can see you are not alone and we all understand only to well. Best wishes
    Report / Delete Reply
  • Posted

    I was interested to read what you said about how you thought your fibromyalgia was brought on because 2 years ago I was on roaccutane which is a really powerful drug after taking it I started getting lots of aches and pains and then was diagnosed with fibromyalgia. I have had no luck with any medication painkillers don't do a thing.I have had physio and acupuncture and do get really down.I find sleeping tablets I buy over the counter more use than the doctor prescribes.
    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up