Difficult GP..? Amitriptyline experiences?

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Hi all, I didn't have a very successfull appointment last week. My GP basically told me that you don't get 'diagnosed with ME', that she is going to re-do all the same tests I've been through (just had bloods taken yesterday). She was in such a rush to get me out of the chair as she was already running late that she skipped over the majority of my symptoms. She never did anything or said anything about the chest pains, stiffness in the morning (it's gotten so bad I wake up and cannot move or grip anything for the first wee while). I had to mention about 3 times that Ibruprofen/Paracetemol does NOT give me any pain relief when I have severe muscle/joint pains - she told me she would write a prescription for codeine prosphate, which I now have. She told me to book another appointment with her next week and maybe she will put me on amitriptyline. I have this appointment with her tomorrow to disucuss. Has anyone had any experience on amitriptyline? Please...any replies would be soo appreciated. At the end of my tether. 

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  • Posted

    My experience was a nightmare on it.

    Whats your History and major symptoms.

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    • Posted

      How so?

      Basically I had a really bad illness almost 4 years ago when I was abroad in Turkey, once I got over that I was never my normal self again. Enlarged lymphnodes in various parts of my body, extreme fatigue, no refreshment after sleep, varying degrees of muscle/joint pain, chest pain, nausea, stiffness in the morning, headaches, trouble with explaining things (can't find the words to say), trouble concentrating, always too cold or too hot (mostly too cold though!). 

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  • Posted

    works great for me.. been on it for 5 years.. made the difference between having a life and not. Also helps with mood and anxiety too. Only isues i have had is weight gain... so just watch your food intake.  Some GPs are really good and understanding.. i have one of them and he diagnosed me with CFS.. which is what doctors call ME now for some stupid reason.  If your not happy ask to see another GP.. right stuff down ... but never go in an diagnose yourself... haha their fragile egos dont like that... just gently nudge them in the right direction. I saw my doctors on and off for almost 20 years before i finally got diagnosed.. its a tough old road.  
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    • Posted

      Thanks littleme1969, I must admit I can be very moody and my anxiety can be terrible from time to time(not that anoyone seems to notice). I am a bit worried about weight gain though as I've had issues with weight in the past, gone from being a bit chunky to having lost a LOT of weight and being underweight, now I'm piling it back on. My previous doctor mentioned the whole CFS/ME possibility to me just before she left , so that's why I mentioned it to my current doc. I will see how tomorrow goes.. 
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    • Posted

      Hi Charlotte, I'm going through a CFS referral myself at the moment for fatigue, pains, dizziness, digestive issues and a whole host of other problems which started September last year.

      It might be worth asking for a Vitamin D blood test as mine came back as deficient. This can result in tiredness, muscle pain and a whole host of other symptoms. But I would push for the CFS referral as well as apparently it can take months.

      Hope this helps.

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    • Posted

      at the end of the day you have to weigh up th pros and cons.. for me i get more benefits from it than i do negatives... so its a no brainer. I just put myself on a constant low calorie diet.. i know that sounds bad but for me its a fdair trade for the quality of life that i get back in return. The way i look at it is its only like being diabetic ... i still treat myself etc... just watch the day to day calories. I can keep my weight stable doing that and have even been able to loose a stone of the 2 stone i put on (over 5 years)  so its totally doable. Its not for everyone i will admit.. I was givern it originally for sleep problems.. this was before i was diagnosed. and all my syptoms seemed to improve. So it made sense with diagnosis came of CFS why i had made improvements so i just stayed on it. Low dose of 10mg is all you need really.. Best to start with half a tablet for a week or two just to see how your body reacts .. then if your ok take the full 10mg.   Sadly there is little out there to help us.. we just have to suffer so anything that helps in any way is a huge bonus. smile
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    • Posted

      Thanks Ben can I ask where you're from. I'm from the Highlands in Scotland and my GP has told me there is no nearby CFS/ME specialist or clinic...that has really got me down too. Some days I feel so depressed becuase of the lack of help I've been getting...it's been almost 4 years now I've felt like this!
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    • Posted

      Hi Charlotte, I live near Sheffield so my nearest CFS clinic is about 20 miles away. I've just had the full panel of blood tests done and if they come back clear then I move on to the next round of test for CFS whatever they are. My doctor put me on 10mg of Amitriptaline which I take 2 hours before bed as it helps me sleep.

      I would definitely get your Vitamin D checked though living in the Highlands. I'm a sun dodger which is how I think my problems started. I'm now on 50000 iu of Vit d once a week for 10 weeks to get my levels up and then smaller doses for life. It has helped a little if that helps.

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  • Posted

    Hi Charlotte.  I find that amitriptyline is the only way I manage my pain as I have a lot of nerve pain: I call it 'tin foil syndrome' where my body feels like chewing on milk bottle tops.  I also get very sore eyes. Amitriptyline helps with both these (and IBS). I think that people with CFS are probably quite sensitive to it: when I started on a small dose, years ago, I think I probably slept for a few days, but that was blessed relief!!  I now take 50mg at night, plus 10mg doses during the day if I need to. As I also have migraines it helps with those as well.  A very experienced CFS specialist I saw some time ago recommends it. But I do recognise that everyone is different and it may not suit some people. I also take Tramadol and Paracetamol.  I would question your doctor re diagnosis. There are clear NICE guidelines re the diagnosis of CFS.  Hope your appointment goes okay tomorrow.
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    • Posted

      Thanks Deborah, I can't say what my worst symptom is as I have so many but the pain would be very high up on my list. Some days everything from my neck to my ankles is sore, other days it's limited to just back and leg pain but even when it's limited pain, I struggle with it. I get very dry eyes which can sometimes leave them in pain also. Thanks for your comments, I really hope I have a better appointment tomorrow than last week, mroe often that not I find myself in floods of tears after visiting the GP from lack of progression. I'm glad that Amitriptyline has helped your case some what.
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  • Posted

    hi charlotte. my heart goes out to u in this situation - trying to manage pain and get a proper diagnosis. re: amitriptyline, i know of many ppl who have been prescribed it with ME/CFS/Fibromyalgia. it seems to be the drug of choice for the nerve pain associated with ME/CFS/FM. i haven't heard of many if any complaints re same except that it doesn't take all the pain away but makes life more bearable. good luck tomorrow. do take someone with u, as the medics tend to adopt better behavior when there's another person present. let us know how it goes.

    Caitlin

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    • Posted

      Thanks so much Caitlin, I really appreciate it. I think I will def give it a try if, which I hope she does, bring it up again tomorrow. If she doesn't I will enquire about it since she did mention it last week. My dad usually comes with me so I'll be sure to brign him along - it also helps having him as I struggle to explain it all and he is aware of how much I struggle sometimes. Sure will let you know how it goes, thanks again. 
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    • Posted

      hi again Charlotte. i don't want to overwhelm u with info. as is so easily done with us ppl with ME/CFS/FM.. however, if u do make a list of questions to ask the GP, do also include having ur B12 & Folate levels checked as well as the vit d. my B12/Folate/vit D were v. low and once addresed, lots of the ME/CFS symptoms improved measurably. 'pernicous anameia' (b12 def.) is an auto immune disease and tends to run alongside ME/CFS/FM, thyroid problems & coleiac disease.

      i do hope the Doc has, or will do thyroid tests i.e.TSH, T3 & T4. they should be on the ME/CFS 'condition elimination' panel of tests. again, my TSH was OK but i was not converting T4 to T3.

      as someone else has pointed out NICE have clear guidelines for ME/CFS diagnosis as have the ME Association. have a look @ their diagnostic criteria or/and or get dad to have a look at their websites.

      perhaps if u let ur Dad run through these msgs, it'll help him to be ready to ask anything u forget.

      we're all behind u on here , sending u lots of positive/supportive thoughts. we know what it's like.

      all good luck for tomorrow, u can do it girl with ur dad's help.

      Caitlin

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    • Posted

      Hi Caitlin and all others, including Charlotte; all that Caitlin has said, is what I was going to say....when there is pain, I usually add the Fibro into the situation....and the Amitriptyline is my drug of choice (couldn't do without it) plus my Gabapentin (not Pregabalin/Lyrica)...and all of the supplimentries.  I also really believe in the Thyroid  probs (as one lady has told us re her research....even though the thyroid results come back within normal range....low dose of Thryroxin helps our energy levels)...as Caitlin has suggested, you and your Dad go in Armed with as much knowledge as you can find.....find the inputs from Sylvia...very useful and knowledgeable....good luck,  keep up the perserverance as it will probably be a  "road  of Elimination" of all other conditions......Bron 
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    • Posted

      Thanks so much Caitilin I somehow missed this message the other day. Thank you very much also Bron. I have had Thyroid tests done and came back normal but I would be happy to bring this up with her again just in case she's missed any tests. I have a follow up app with my GP on June 10th - so I can let her know how I've been getting on with amitriptyline (I started 1 10mg tab last night before bed).  How long does it usually take to start to have an effect? I still struggled to get to sleep last night and woke up many times trhough the night - along with my pains still present..shoulder (new one for me!), back and legs.~

      I'm lucky to have a very protective father, even though I flew the nest a few years ago he's very good with supporting me! For my next app we are both gonig to print some articles off and have as much info about this as we can as you've both suggested. I've now been referred to rheumatology to eliminate those types of conditions. My GP is still saying though she does not 'diagnose' ME, my Dad asked her what to put on any forms, or reason for abscence at work due to not yet being 'fromally daignosed' - she had no answer! Do any of you guys have any suggestions for this?

      Also worth adding she did mention the possibility of Fribro for the first time yesterday.

      Char

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    • Posted

      Hello Charlotte; as to "what can dr put on medical certificate"?   In  the beginning for me my GP just wrote  "medical condition".....do you think you can get away with that, until official diagnosis comes through?   As for the Amitrptyline...10 mgs is a small dose, so it will need to build up in your system....I take 35 mgs (10 during the day, and 25 at night)...the maximum dose is 70 mgs.  Would you be willing to add Gabapentin to your meds, as this is very good for "stopping Nerve Pathways"..i.e.....stopping the pain signals from reaching  the brain, and hence "decreased perception/feeling of the pain from the affected nerves".  If your GP has already suggested Fibro..then these are the meds which are recommended...some say Pregabalin/Lyrica..but if pain is widespread and very  bad...this drug didn't do anything for me....remembering we must let it build up in our systems ( 2-3 weeks or more)....sometimes Cymbalta is added...this also is for pain, and also acts as an ant-depressant, which you may find beneficial, if you feel your pain is affecting you emotionally?  which is natural...we are all human.   I take this med if I am having "a bad day/emotionally", but not every day....maybe once a week, as I don't want to become addicted to it, as it can take awhile to get off it, when you start to settle..but, please, take and trial whatever your dr suggests, as you won't know until you trial the meds/treatment offered???  I also rely heavily on my physio, to relax my muscles....hydro therapy is also a good way of exercising your muscles without straining/pushing them too hard...pilates I have also learn't..but am not always upto doing "the stretches" each morning...please keep in contact, as you WILL get so much support and advice from all the members on this forum site.....sending you my thoughts, as I know this is a time of Rollercoaster emotions.....Bron
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