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.
My experience was a nightmare on it.
Whats your History and major symptoms.
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.
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..
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!).
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.
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. 
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!
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.
Sounds like thyroid to me ! Even if tests say normal ask for the peroxidase and antithyroglobulin blood tests but don't be surprised if your GP says no.
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.
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.
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
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.
Yes. Recently I have twice been prescribed small doses of amitripteline help sleep when I was having spells day and night ov agony 9/10 on my pain scale. It together did little to relieve the pain an other symptoms.
I also was prescribed a very big dose to judge by the relative size of pill. That was to aleviate the apalling condition I was in as a result of five other precribed pills. I started to improve when I stpped taking all six pills. I was not aware of any effect good or bad from the Amitriptyline. The Amitriptyline was prescribed by the then Professor of Psichiatry. He wrote more than once to have the initial consultant change the treatment.
The other matter is the behavour of your GP. I changed oncologist recently because she set her lateness at a higher priority than my medical care. My life in her hands? No way!
Hi Charlotte
I was prescribed amitriptyline a few months ago to help alleviate IBS symptoms as it's a depressant of the CNS and gut. It did help with the IBS but I was extremely sensitive to the stimulant side effects at night. I would wake up feeling like my mind hadn't rested at all as my dreams were the most lucid and crystal clear that I'd ever experienced. I had to stop taking them and then developed insomnia for a few nights. I had withdrawal symptoms just from a weeks worth of a single 5/10 mg dose before bed!
Each person will be different in their response but for me the benefits weren't worth the negatives. I'm not sure if over time you become tolerant and have to up the dose so I've tried to stay away from them. I can't comment about pain relief though, sorry. My bloods never give anything away about my CFS!
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
Hi Charlotte915- I have been on amytriptaline for 5years now. It has helped me with my sleep but I dont always feel refreshed after sleep. I also feel my anxiety levels are heightened and I'm not sure it's due to the meds or all the symptoms and other things that is goin on inside my body, I have gained weight since being on the meds. But I do feel it has helped me with some of my nerve pain to some degree. Give amytriptaline a go as it may alleviate some of your symptoms hopefully. Let us know how you get on with your appointment and whether you find that the drug works for you.
goodluck
Hi Guys, I'm not long back from my GP. It went ok she has given me 10mg Amitriptyline to begin with, which I'm not too sure how I feel but I hope they help. I will begin them tonight. I feel like my GP is focusing on my symptoms individually rather than all together. My blood tests came back fine, the LDH test which the heamotologist did last year (while they thought I had lymphoma) was done again, it was requested it's checked every few monts - it came back lower than the results last time..not too sure what that means. My GP has also referred me to rheumatology at my local hospital just to rule more conditions out. I've also had to make another app with my GP for 2 weeks time to check in and update her. Wish me luck wih the amitriptyline!
sounds like a good appoinment. all good luck with the amit.? ley us know how it hoes for u.
Caitlin