Very little support

Hi,this is the first time i have written on this blog but i do visit the site and read other peoples comments and have to say that it is very reassuring to know im not alone,and everyone seems so nice on here.I was diagnosed with fibro about 4 years ago when i went to see a rhuematologist about my joint pain,at first i kind of brushed it under the carpet because i was also diagnosed with osteoporosis.I am 47.As time went on i began to experience more and more different symptoms and was in a lot of pain.I was put on Amitriptyline which helped for a while and then went back and saw another Dr who told me that Fibromyalgia was a name they give to something when they dont really know what it is thats wrong.Imagine my horror!! The rhuematologist reccommended pregabalin which just left me like a zombie and that wasnt good when i had work and school runs to do so i continued on.Last year i started to become really bad with it so i went back and saw a different gp who was really helpful and understanding and he wanted to start from scratch to see what meds were best for me so he put me back on Amitriptyline but a higher dose and i am actually getting some sleep now but not when hubby goes to bed at the same time,and i know this sounds awful but if he cuddles me the pressure on my ribs is intense,can you tell me if this is normal? I am experiencing a lot of tummy problems too.No two days ever seem to be the same.Sometimes i cant bear to touch anywhere on my body because it feels so sensitive.I am writing this at 4.27am as youve probably guessed it,my hubby came to bed the same time as me!!!! Im telling myself im doing the night shift so will go to bed when OH gets up.Can i also ask,does anyone else thats taking Amitriptyline suffer with a mega dry mouth when they wake up? Thankyou for your time and hope you are all keeping as well as possible.

22 Replies

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  • Hi

    I have been on Amitriptyline for a few years now and apart from getting few dry mouth and a bit sleepy the next day then it is a great tablet, only problem is I still wake as the pain hurts to much for me to sleep.I also have a pocket of mint imperials for the dry mouth

    Take care and kindest regards

    Terry Ettridge

  • Hi

    I was on Amitriptyline. Started at 25mg then went up to 100mg but after a while it seemed to stop working. My doctor changed and put me on Duloxetine, OMG what an awful tablet. I felt sick and spaced out all the time, it did not help me at all with sleep or nerve pains and I just felt like a zombie. I have now gone back onto Amitriptyline as it does help sometimes. Yes I too have the dry mouth problem. My husband and I no longer sleep in the same room, as I need space to sprawl out, sleep with remote controls for the fan and heater so I can turn either one on depending on how hot or cold I am, and my constant waking and trying to make it to the toilet on time, which I rarely do these days without an accident due to pain, stiffness and bladder spasms, disturbs him too much. My OH is very supportive and encourages me to do things when they suit me, and so you may find me working at 3am and fast asleep at 1pm. As I work from home this works well for me.

  • Hi , have you mentioned this to your GP because although it sounds like fibro symptoms its best to get them checked out if they are new to you ... I suffer from IBS which goes with fibro a lot of the time and if I eat anything big my stomach automatically bloats, I now eat little and often... The rib pain could be chostochondritis , that's the first symptom I got with fibro ... 23 years ago when I was diagnosed, most days my ribs are very sore to touch bad days it hurts even to breathe and its really quite scary until you know what it is then its just annoying.... I tried amatryptaline but it wasn't really any use to me except it worked rather too well on making me sleepy and I was like a zombie all day.. I now have a good combination of night meds and sleep isn't too bad. At the moment I am trying new day meds which I am told will take time to kick in, but I am also in pain from osteoarthritis and like you I am 47...

    Glad to see you posting on the forum

    VG x

  • Hi hun

    I suppose I'm quite lucky that it is the one thing I don't get is a dry mouth. I take Tramadol for my pain, it is the only pain med that helps me, or at least it gets me through the day without that awful flu feeling, I also take Amitriptyline, just 10mg a night, thankfully it works for me or I would not be able to sleep because of the pain all over my body, on really bad flare ups I also take 2 Paracetamols. I also get very painful ribs and tummy, so I guess again it is part of the terrible package of FM. My Mum also has this condition, which is really weird and she gets a dry mouth, she constantly sucks werthers boil sweets. Doctors surgery can also refer you to a pain management clinic, I have not been to one but it is there if my pain meds don't work anymore. I wish you all the best hun and take care, this is the first time I have replied, I usually like reading all the other messages and find them amazingly helpful, it is a brilliant site :o)

  • My m3ds are the samebtype as yours plus pregabin but I am now on a ver very highdosage it worksbtho and if I miss any meds back in agony almost immediately

  • if you see your gp you can get a dry mouth spray as a few meds give me a dry mouth.

    cheers

    Belinda

    Hugs to you xx

  • Hi there, i too suffer with a dry mouth so severe that i cant even do the school run without bottles of water, i carry them everywhere! I think mine is maybe due to gabapentin.

    Regarding the sleep problems, i too had this but my OH is a solid 22 stone rugby player, it was like the hippo and the duckling on our matress and when he tried to cuddle me in his sleep i would start screaming at him to get off which is sad. I also disturbed his sleep cos i was fidgeting all night up and down restless and giong backwards and forwards for top up meds in the night. We have found a solution that works perfectly for us......for the past year he has slept on the sofa!

    Its not ideal i know, but the kids are in the remaining 2 bedrooms and neither of us was getting a proper rest. He was terrified of accidentally hurting me so he wasnt having good quality sleep either. He loves it on the sofa, we are lucky to have a gorgeous very comfy corner suite and he keeps his pillows and quilt behind it and he loves snuggling down for the night on there and i have a big bed to myself! I know this isnt for everyone but needs must for us im afraid. Charlii xx

  • yes,like charlii, i have to take water with me wherever i go as i also have a very dry mouth. i always keep at least 2 bottles in the car because i know im going to need them.

  • Rib pain, tummy probs oh how it all sounds too familiar, I have tried a range of meds since being diagnosed currently on pregabalin, Prozac and codeine - they are looking into hormone levels to see if that's exacerbated it, I am 51 so menopause is likely to playing a part in how rubbish I feel. I miss the cuddles.

    Hope your day goes ok, it's lovely and bright here albeit cold.

    Maggie

  • I stopped ametryptaline as I just did not see the benifits to me. I do understand what you mean about sharing a bed with someone. I cannot stand my husband touching me as the pain is so bad, he tries to be gentle but his hand feels like a very hot and heavy iron! I don't sleep that well either and I also suffer IBS. it is pretty tough this fybro stuff. I have not found any meds that help as yet but we must hang on in there .

  • hi yes it is normal to get dry mouth i have chewing gum which helps i know it is not nice having to use it but it help. Maybe try gabapentin which i am on. yes it is normal to get pressure soreness. i have been lucky and have a good rhumatoligist.

    gentle hugs xx

  • Hi, i have a dry mouth too 'cos of Amitriptyline, i chew sugar free gum to conteract the dryness. My husband and i now don't sleep together so that i can get as good a sleep as is possible with FMS. I am lucky that i don't have any children living at home anymore so that we can sleep in different rooms. ((hugs)) <3 xx

  • Hi , read your post . I can familiarise with what your going through, I've been like this for four years. I can't bear to be touched in bed. When my partner cuddles me my back hurts my hips hurt and recently my ribs . I have an area that goes right around me that aches it's awful n if this is playing up nothing comforts me. No sleep. That seems to be my most used words ,, no sleep,,, lol

  • Hi , read your post . I can familiarise with what your going through, I've been like this for four years. I can't bear to be touched in bed. When my partner cuddles me my back hurts my hips hurt and recently my ribs . I have an area that goes right around me that aches it's awful n if this is playing up nothing comforts me. No sleep. That seems to be my most used words ,, no sleep,,, lol

  • Hi , read your post . I can familiarise with what your going through, I've been like this for four years. I can't bear to be touched in bed. When my partner cuddles me my back hurts my hips hurt and recently my ribs . I have an area that goes right around me that aches it's awful n if this is playing up nothing comforts me. No sleep. That seems to be my most used words ,, no sleep,,, lol

  • So many people seem to get a dry mouth from their medication - it's yet another problem for us to deal with!

    Can I please offer a word of caution about the use of sweets to ease the dryness? They're OK as an emergency measure of course, and we all like a sweetie, but if you use them all the time, you will get dental decay and put on weight - more problems!

    Sugar-free gum is alright of course, and you can get dry mouth spray, either on prescription or over-the-counter at most good chemists, but the best thing is to considerably increase your fluid intake.

    Most people are chronically dehydrated, anyway, and being dry definitely increases joint and muscle pain. I have found that even 3-4 extra glasses of water each day makes me feel much better, and surprisingly, doesn't make you pee all the time!

    Mouth dryness bothers me very little now, and if I don't drink enough I definitely have a lot more pain.

    Oh - extra water helps with constipation too - and that's another delightful side-effect of our medications!

    Turn on that tap!

    Love Moffy xxx

  • hi i have had fibro for 10 years i also have osteoposis and severe nerve damage to my feet so its agony to walk .yes i to get a dry mouth but as for the problems of being in constant pain yes i have that every i would love to be cudled but it hurts to much .and sex is very painfull .like you i knew nothing about fibro but i go on facebook and there is a part for people with fibro even men get it and children ,i was told to google 100 symptoms of fibromyalgia ,i did not have all the symptoms but it did help me to understand what my problems were hope this helps take care and softest hugs .

  • Hi I have read all the comments and it is all very helpful. I too sleep on my own (well apart from Maxie My little yorkie) who will not leave me at all if I am in bed or poorly,even him touching me sometimes hurts tho. :-)

    I am on Ametyptaline and have a dry mouth and it has of late turned into a tickly cough,and when it is dry I feel my tongue gets stuck,and my speech is aweful! I started sucking cough sweets the boiled type, and ended up with swollen taste buds,very painful on top of every thing else> :-(

    I have to try to drink more water as moffy said because my meds caused me to have constipation which has now led to med being very poorly and needing a small op to put things right again. :-( I find it hard to drink too much water as that is all I drink and it has got boring! Does anyone else find that coffee tastes weird on meds,before I had to take mine I could drink coffee....be it only a few cups but it broke up the constant water boredom lol .

    Maybe we all need a reminder to "turn on that tap " ha ha I am going to set mine up on my new Tablet as a reminder till I get into the habit. My husband just laughed and said well at least that is one Tablet you like "very funny " ;-)

    Well everyone gentle hugs to you all x (((((((((((((((((((((((( :-) )))))))))))))))))))))))))))))))))

    Love RD x x x x

  • Hi again! I would just like to say thankyou to everybody that left a reply to my comment VERY early this morning!!!! It really is comforting knowing that there are other people that understand how you are feeling but its also sad that so many of us are suffering in lots of different ways.I wish we were all well.I really do wish you all well and hope that you have some pain free days.The other thing that i wanted to add was about my eyesight,it has become dreadful and i believe that this again goes hand in hand with fibro.My husband laughs at me because i have to get my children to read instruction labels to me so im biting the bullet and off to have eyes tested.Stay well and safe and hugs back to you all.Thankyou once again Jan xx

  • hI there, please don't worry about fibro affecting your eyes I think it's fair to say that most people experience their sight deteriorating in their mid to late 40s. I've started to have some tummy problems and interestingly enough I've found taking liquid minerals to be really helpful. You can get them online they are called Maximol.We fibromites usually have a lack of digestive enzymes which hinders the absorbtion of our food. In my experience recently the liquid minerals lessen the bloating and general discomfort. Hope that helps. x

  • Yes...I always did when on a 50mg dose of Amitriptylene. I gradually reduced the dose for that reason. I had to constantly chew gum and remember to take a bottle of water with me when leaving the house. I got down to just 10mg and the thing is...I still had sleep problems on the higher dose. However my melatonin levels are out of sync...I usually sleep between 3am and 11am. Saying that, there was an occasion when I got up at 7.40am to go to the loo, then went back to sleep and woke at 1am. I get a lot of back pain and stiffness, fibro related, sciatica type pain and disc problems, having previously slipped a disc twice. I often feel as if I'll put my back out again...the last time was Feb 2009...and I had to go into hospital as the pain was unbearable. I get muscular and nerve pain but that is controllable. With me, the chronic fatigue is worse than the pain at times.

  • hi there,

    sorry to hear what u are dealing with in one sense i am lucky i have no children i barely cope with myself so good on u! i am 25 but i have trouble with my tum like ibs at times my sleeps dreadful even if i do sleep wake up feeling exhausted, i am on 100mg and rising just changed from gabapentin pregablin,150mg dicflonac, 12mg dizaepam, zomoroph 60mg, oromorph solution 20-30mls daily if needed, 120mg propanolol (anxiety), 40mg citlopram (depression) movical to help bowels. i am in pain all the time never goes dulls to background pain rarely but my pain diary usually 8-10 every day all time. i struggle to move bad mobility use zimmer in house and wheelchair outdoors manage very few steps stick and assisted too from car to front door. i really understand how it takes over and changes so many things. ever need a chat private msg me if u like! x

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