One month check on Tuesday to see how I am adjusting to diagnosis of Fibromyalgia"....

[Klfhl]

On 10mg amitriptyline only and to be honest it does nothing for me....not sleeping and in pain in legs but more so hands n wrists.... I plan to ask for Rheumatology referral and hydrotherapy if available as I don't want to go back to living on painkillers again to cope.... Does anyone on here have anything else I can request?

[Mdaisy]

Hello Klfhl,

Welcome to the FibroAction Community.

I, like you had no benefit from Amitriptyline, however there are other recommended treatments for Fibro. Please see the link belowto our FAQ section which may be of help;

healthunlocked.com/fibroact...

As newly diagnosed you mind find it interesting to browse the FibroAction site fibroaction.org, in particular our 'All about Fibro' range of factsheets which you can download and print for your reference & to take with you to appointment.

Here's the link ;

fibroaction.org/Pages/About...

I hope this helps & I hope you get some pain relief soon

Emma

FibroAction Administrator

[Klfhl]

Thank you Mdaisy very much appreciated...all info is good..totally confused by everything as since diagnosis things have moved far to fast ...somehow I'm losing my mind and fed up with ignorance.... Doc is fab very understanding and young with knowledge....it's a huge relief knowing I'm not mad and this forum helps a lot...

[Fibrofoggiest]

Hi Klfhl, I am sure you will find great advice from the links Mdaisy has given you. Not being a medic myself, I can only say what I have experienced and when I read you are on 10mg of amitriptyline I thought what a low dose that is, it certainly wouldn't help me with sleep at all. I would suggest that you talk to your understanding doctor (isn't it wonderful when you come across one) and see if maybe the dose can be increased.

I'm glad you like this forum and like you, prior to joining I really thought I was going mad, just to be believed and understood makes such a huge difference doesn't it.

Foggy x

[Klfhl]

Yes it's a low dose because she knows I dislike meds... I was on very strong stuff for many yrs and decided to stop! My GP is fab and yes going by many others comments I am very lucky....I wanted to win without meds but the way I feel most days it's a losing battle.... I just don't like feeling drugged up....i will now go for appointment more aware and with an understanding of what we need to do next... Work is so exhausting and hard...sleep is hit and miss as is just getting up most mornings....I feel for every person with Fibro as until my diagnosis I really thought I was imagining this pain...it's people like yourself and Mdaisy that make this site wonderful x Ty very much for your kind words xx

[TheAuthor]

Hi klfhl

I sincerely hope that you are feeling as well as you possibly can be today? I am so sorry to read that you are suffering in this way, and I sincerely hope that you can find some resolution and relief to your issues.

I have read through the replies that you have so far, and you really have been given some really good advice. I was wondering when you see you GP, are you going to ask for your Amitriptyline to be increased? As, this medication has a sedative in it, and if you are already struggling to get up in the morning, extra sedative could make it very difficult?

There is an alternative that you could discuss with your GP, and that is Nortryptaline, it is Amitriptyline without the sedative. It is just a thought, but maybe you could discuss this with your GP.

Good luck with your appointment, and please keep us all up to date with how you are getting along.

All my hopes and dreams for you.

Ken

[Klfhl in reply to TheAuthor]

Thanks Ken I will. Xx thanks xx

[Klfhl in reply to TheAuthor]

I will take all the comments to GP see what she deems way forward. Thanks for your reply xxxx

[traceyj63]

I find myself in the same situation. Diagnosed a month ago and 10mg of amitriptyline is doing nothing for me. Stilk can't sleep for more than two hours atvavtime and has done nothing to reduce my pain. Feel a bit more positive with a diagnosis though and off to see my gp for a review tomorrow.

[Klfhl in reply to traceyj63]

Hi Tracyj63 I hope you got on good at GP? Lack of sleep is horrible I sympathise with you on that one. Thanks for reply xxx

[traceyj63 in reply to Klfhl]

Hi Klfhl, well, day one of increased dose of amitriptyline, we'll see! Feel like I need to sleep more but have to work

[Sniffer8]

Hi, it's quite fascinating how we all try to cope with our I suppose unique experience of Fibro. Like you Kifhl I am reluctant with medication. I was prescribed 10mg of Amitriptyline by my rehab consultant to relax my bladder as I get urgency. She misunderstood my concerns re fatigue. It is true that the urge to eliminate disturbs my nights but I do sleep so didn't require anything with sedative properties. Doesn't matter how much I sleep I am never refreshed and struggle to have any energy. This drug wasn't prescribed for Fibro as this was diagnosed later. I've since wondered if I should try the Amitriptyline and have tried a couple of times but even 10mg knocks me out. I know I would develop a tolerance to it and that there are alternative tricyclics, but I remain suspicious. I personally have to be convinced re the purpose and benefit of any drug before I will take it. For e.g, I have high blood pressure and take two anti-hypertensives. This isn't ideal but is necessary. I reluctantly take a statin but this was changed twice to a more suitable one. I take Omeprazole for gastric reflux which is vital as this is a horrible thing when it happens. Other than that I take senna nightly and Fultium D capsules as per rheumatologist. Paracetamol as required but these don't touch neuropathic pain. I'm not trying to be 'male' about analgesia and there may come a time when stronger painkillers are necessary? I'm pleased you have a receptive GP. Like you and others here I continue on this journey of trying to understand and adjust.

[Klfhl in reply to Sniffer8]

Hi sniffer 8 thank you for reply x I feel for everyone who has this pain daily so your definitely not being " male" with comments xx I have had few friends say to try Vitamin b or is it d injection? So I wonder is your FultiumD similar to this? I find general painkillers are useless and I had 6 years on trauma doll this made me very dopey but again needs at time where more important than how meds made me feel. I appreciate your words and look forward to discussion with GP tomorrow. Xx

[Lucyhobbit]

Hi, I just wanted to share my experiences with amitriptyline. I don't like taking traditional painkillers, but I do take 75mg of amitriptyline at night and 25mg in the morning. I don't feel sedated or drugged up at all, so you may not feel too bad on it. Of course, everyone is different and reacts differently to the various medicine options but it might be not too bad for you - have a good chat with your doctor and see what your options are.

[Klfhl in reply to Lucyhobbit]

Hi Lucyhobbit, I would be fearful of taking high dose sedative. I drive everywhere due to where we live and regularly have my baby grandchildren in car so like to have clear head. Xx again thanks for reply I am really touched with everyone sharing experiences with me xx

[Zforsyth]

Hi Kifhl

I have lupus and fibromyalgia as well as anxiety disorder but lately I am getting more control of the fibromyalgia (to a point) with the help of a very good occupational therapist. Night time I am on amitriptyline but 50mg also for the leg cramps I take quinine 200g I have to take nambumatone for inflammation everyday but that's more for the lupus . But my one thing I think that has helped me with fibromyalgia is my occupational therapist, oh and I did CBT to help me get my head straight in dealing with these conditions

[Klfhl in reply to Zforsyth]

Hi Zforsyth the med Quinine is this herbal and does it help for restless legs also? Again thank you for taking time to reply to my post x

[Sarahs23]

Hi I was diagnosed last month I also take amitriptyline 10mg at night and I take tramadol to and I sleep really well now, I don't want to take any meds that will make me dozy in the day as I work and am single parent so I take naproxen it eases pain for awhile, I had my first rheumatologist app this week and was referred for physio, he sent me for an X-ray on my hands and I'm waiting for a scan on my knee but he discharged me from rheumatology.

Sarah x

[Klfhl in reply to Sarahs23]

Hi Sarahs23, I feel just same as you I can't be dozy as my work needs me alert and aware. I have only seen GP so far but plan to ask for rheumatology referral and re access meds available. The comments I have had mean I will go in with knowledge and information I never had at diagnosis. It's a great site and I am so glad my friend recommended it to me. Good luck and I hope you get as great a feedback as I have xxxx

[rowantree]

I take Amitriptyline too, I'm up to 30mg now. My GP wanted me to gradually increase the dose to see if it helps, and see if its not too drowsy making. Not helping yet, but only makes me drowsy for first couple of days each time I increase. I guess I'll keep going until I hit 70mg, so long as the side effects are manageable. Then I'll try that for 3 weeks. But if it's not working, no point in taking them eh!

[fenbadger]

Hi Klfhl

It's interesting to read those answers. I see patterns developing. I think you have got most bases pretty well covered. the only one I might add in is ask about nortriptyline. It's very much the same as what you're on but just might help differently. To be honest you're in early stages of finding the right treatment for you, and whether or not you like taking medicines and for whatever reason you don't like it, sometimes we must accept we need a bit of help. I don't like keep taking pills either, I rattle enough as it is and even though the GP will be sure there's no untoward interaction between so many I sometimes wonder.

Lucy's on 100mg ami daily and doesn't seem to get the "hangover" and Sniffer finds 10mg more than enough. I'm on 40mg and still unsure. It takes time to adjust and settle down so don't reject it out of hand just yet.

Much under 100mg is not a high dose so it's relatively mild.

Looking further down your post you have a good GP. Part of that pattern is newer doctors seem more aware of fibro. You're lucky and can discuss things sensibly.

Do look at Emma's link. It's very informative.

I'm experimenting with passive muscle relaxation and tai chi at the mo and am looking at progress or lack of carefully. There's also the standard sleep clinic routines. Most of us try different things and there's probably no single fix.

I'd love to control this wretched condition with mind, exercise and diet alone but have to be realistic.

One if the essences of good exercise is actually NOT to do it until it hurts. there's a good pain which tells you you're making progress and a bad pain which says you've overdone it. For hydro you could substitute swimming at any time. Anything non weight bearing is ok depending on your personal mobility. I cycle a bit but not anything like as far as I used to. I get a fibro pain in my left forearm after a while and it stays for ages but the ride gives my body an incentive to sleep.

Sorry that's a bit rambling and I really hope it helps.

You're far from mad or ignorant. Your question is phrased intelligently

[Klfhl in reply to fenbadger]

Thanks for taking time to advise me fenbadger. I use gym as often as I can as I also believe exercise is a great healer. Scottish weather makes it very difficult to enjoy cycling but like you I am keen and enjoy it. Hopefully doctor will tweak my meds and we will get a good balance soon x

[fenbadger in reply to Klfhl]

You're welcome. Sounds like you have a good routine that suits you.

In general terms, Whereabouts?. You have some good cycleways up there but its a sparse population so they're far apart.

Don't be shy to report back with and for feedback. We'd be interested and may have something useful to add.

We're all different ie we're all individuals. If you have a dappy sense of humour you might like to join in some loopiness. Endorphins reduce pain. Laughter is the best medicine. It can sometimes help to forget things for a bit.

We need to keep an eye on Foggy as she gets catnapped regularly. We need more patrols around Castle Neroche. She posts some lovely pictures.

In the meantime some gentle hugs for the pain.

[Klfhl in reply to fenbadger]

I live close to Edinburgh so we have great cycle ways.. Always enjoy banter and laughter . I have noticed foggy going missing and I really enjoy the pics everyone posts. Hugs back Ty xxxx

[solowheelie]

PLease do try hydrotherapy but it made me much worse so had to stop. Have you tried pain management - i don't know if they work personally but i know others who have found it helpful. There is also counselling available for pain - generally cognitive behaviour therapy (CBT)

[fenbadger in reply to solowheelie]

Love the tag. Do you do that on pedal bike or motorbike?

[Klfhl in reply to fenbadger]

Well I usually go pillion on motorbike as with my co ordination I would kill everyone lol

[Klfhl]

Thanks everyone for your info and replys! Makes trip to doctor much easier. Xxx