Anyone not taking meds ?

Bones, joints and muscles
1

Hi Everyone,

My name is Amanda and I am 45 years old

I am new to this group and have recently (June) been diagnosed with Fibromyalgia, although like many others on this site I think I think I have been suffering for years. I was always told I was suffering from depression, and that was causing my insomnia, which then caused my body to be tired and hurt...and had I thought about trying yoga and deep breathing !!!

After many blood tests and appointments and 16 / 18 tender points I was finally given a name for what was wrong with me !!

At first I was relieved to have this diagnosis and really believed that if I avoided stress and didn't over do things I would be back to semi normality... how wrong was I. I am finding the pain ,aches and fatigue  disabling at any random time. I have no control over it at all lately! The insomnia is at an all time worst, sometimes no sleep at all and finaly fall asleep about 5 - 6 the following morning, and the slightest thing wakes me up again !. Fibro fog has also become a constant companion .

I don't know anyone else who has fibro and as hard as my family try to understand it, I know they dont really know just how bad I am feeling, so this site has been fantastic in learning about this awful condition.

I have been prescribed 10mgs of Amitriptiline with permission to find my ideal dose between 10mgs up to 20mgs (liquid form) by my doctor, but have been very nervous of taking it, but I think I am going to have to give it a try !

Anyone not taking any meds for fibro and doing well?

Any info on amitrptiline side effects and results would be appreciated !

Also any info on how you get your head around the fact you could feel like this forever would be so welcome..because right now I am struggling with that one

2

Hi Amanda...  you mention symptoms that we all put up with.  Sometimes some folk are a small roller coaster than others, sometimes some folks fibro increases.. some folks flares are worse and more cyclic than others...  A whole bucket of all sorts...

Some folk take some drugs, inclusive Amitrip....  it's may suit some folk, some it doesn't.  There is a WHOLE raft of drugs if one chooses to try any or more with the GP, or specialist blessing/s.  

Some folk have been through most of them and decided after awhile that they no-longer have the desired pain killing affect, or the side effects to much.

Remember to ween off any drugs you've tried or are taking..

(just quietly, I have heard that the natural wacky backy, is the best thing to use, especially for taking away pain, and for sleeping.  Like most things, don't abuse it.  But to use it as a sleeping aid, only when really needed.   So far myself I have tried it twice a few years back, and agree it does work.  But it's not legal here.  I have to use half a sleeping tablet to aid sleep.  I refuse to take a whole, and refuse to take for more than 3 nights in a row.  I only use half a tablet to aid a good 4 - 5 hrs deep sleep, and then a couple of extra hours sometimes after not being able to sleep past 2 - 3 hours for days on end.

It is really important to 'Get Sleep'..  it's the only way our bodies muscles can get to relax and the brain to!!!

I am chemical sensitive.. so I don't venture down the path of experimentation.  I do have to take just enough Tramadol to settle my neck into my head junction.  Flares, I have to ride through as nothing will go near that pain load!  The Ibuprophen I take for migraine heads...and I try to keep it minimal to, as the stuff is nasty stuff.  

If and when Marijuana becomes legal I will be using/eating a little 'head' mushed up and steeped in hot oil, and then mixed in yoghurt, only on those nights when desperate for sleep OR in a major Flare.

All the very best Amanda..  take care.

3

I've posted, but because I used a natural herbal 'word' I think they have moderated it!!???

4

Hi Amanda. Like you I was only diagnosed this year with Fibro, although I have had it since I was a child I suspect, the pains were called 'growing pains'! 

I too was prescribed amitripiline 10mg and I took it for a couple of months, it was helpful in so far as it aided sleep, but as I have been queried with Sjorgens syndrome, I stopped taking amitripiline to see if it was the meds causing the dry mouth rather than Sjorgens, so currently, I only take pain killers of varying strength - depending on my needs.

My insomnia is no better, my brain fog varies as does the pain, but if it wasn't for my dry eyes and mouth I would still take amitripiline, it did help with sleeping. 

It takes time to come to term with this, I am not sure I have fully yet, but I have at least stopped beating myself up about not being able to continue to work, well nearly, and I am learning to pace myself better, and I am even starting to like myself again, but this doesn't happen overnight! 

Take care and gentle hugs X 

5

Hi Amanda

I have been suffering for over 20yrs and only diagnosed with Fibro Aug 2014.

I have had an experience of a lifetime.  In Noveember 2014 my GP referred me to have one to one sessions on CBT (Cognitive Behaviour Therapy) ....I was a bit sceptical but these sessions were only for six weeks.  It has taught me how to be more confident and deal with one day and moment at a time.  It has been an eye opener for me.

I am 45 yrs old with two sons aged 11 and 18 and a husband too.  It hasn't been easy for me with not getting much support.  Since being diagnosed and involving them life has become more bearable and the understanding for them much easier as so much information is on-line.  If you have the attitude that you will NOT allow fibro to get the better of you but you to have a better life with fibro then that is the way forward.

Since having my CBT therapy it then gave me the confidence to look out for myself and in Jan 2015 seeked advice for herbal remedies and started with this in Feb 2015.  Again, I was sceptical but to this date it's the best ever rewards I have had with my pains reducing.  Although it is a slow process it is a POSITIVE one.  Because of advertising please message me privately so I can give you further information if you are interested.

You are not alone and we are all here to help and support one another. I joined this forum March 2015 and have many amazing fibroites that are all in the same boat. Take care and sending you gentle hugs from ME to YOU...... xx

6

I"ve been diagnosed about a year too. Like you I have random pains and lethargy hits at any moment. Other days it's not too bad. I only take painkillers at present as I'm holding out against other drugs until I really have to. I'm lucky as I am retired so don't have to worry about working but it still interferes with my life and stops me doing what I want and at times I feel very scared of the future. Not much help really! But I think you should try the drugs to maybe improve your life now and remember it is not your fault, it is an illness like any other and use one of the fibro posters with all the problems shown o try to convince your family.Good luck and gentle hugs

7

Hi Everone,

Thank you so much for all your kind replies...it is so good to know you are not alone and have others you can speak to who understand just what you are feeling. I hope to make lots of fibro friends here !!

One thing I am grateful for is that my symptoms have only gotten worse in the last couple of years..as my children are 26 , 25 and 15...so I dont have the demands I used to have in my life and can take time out when I need to...I also have given up running my own business for now, as it was just too demanding and fibro fog and taxes don't mix well ..lol

I am in awe of all the people here who have children or are working I honestly don't know how you do it ...I have two grandchilren and I love looking after them and they have always been sleeping over or coming for tea and its so upseting to me to have to arrange the days they visit or sleep over around my hubbys work rota so he can help me and take over when the fatigue hits!!

I am hoping this is just a long flare and soon I will be back to my own type of normal !

I plan to make some big changes in the new year ( diet and journaling to name a couple) and see if I can deal with fibro this way before I try the meds.

I will keep you posted on my new year plans and any results I have.

Fingers crossed!!

Does anyone else find keeping a diary helpful??

Has anyone tried a gluten free diet ??

Take care everyone

Amanda

 

8

Hi Amanda, i was diagnosed 8 months ago with fibro GP put me on all sorts of medication but every single one I tried make me feel like a zombie.

My concentration was worse and just wanted to sleep which isn't practical in my line of work as I deal with patients every day myself .

I attend the gym as the rheumatologist said would help doing gentle exercise but that's when I'm not tired and must say I find it makes the pain worse but don't want to give in to it .

I take the occasional Iburofen and paracetamol to keep me going which helps a bit .

All the best for 2016 Amanda

9

Hi..

Thank you for taking the time to reply.

At the moment I am using co-codamol for pain when I really need it.  My doctor won't give me anything for sleep and I so agree with you that sleep is so important..I am lucky if I get 3 hours a night most nights lately...and a couple of trips to the loo included in that ..lol.

The reason I am thinking of taking the amitriptiline is to try and get some decent sleep and hope this will help with the pain and and fatigue!

I too am sensitive to so many things that I don't really like taking anything if I can help it..

Take care

10

Hi there Amanda,

I've been diagnosed for a year now, after suffering a shoulder injury 2 years ago. I was diagnosed with osteomylacia at the same time, and prescribed vitamin d supplements to help with that.

Unfortunately it seems like my body is against me, as I also suffer with some serious mental health conditions and a skin condition called Hidradenitis Supperativa. This causes a MASSIVE issue with any treatment for Fibromyalgia, as the HS treatment rules out a lot of the stronger painkillers (tramadol, naproxen,etc) and my mood stabilisers can't be taken with any anti inflammatories. So I just have to live with it. Fortunately, I was signed off work nearly 4 years ago, and have no children, so if I physically can't move or get out of bed then I don't have to.

I did try gluten free at the beginning of the year, which helped a lot with the fibromyalgia, but had an adverse effect on my HS.

I live my life just playing with the cards I've been dealt, and making a point of living my life to the full on the days that I physically can. My little way of sticking two fingers up at my broken body and proving to myself that I will not be beaten (at least not every day) x

11

Thank you for taking the time to reply

We are in a very similar situation, both being newly diagnosed and you are right, I think it will take a long time to accept that you are not the person you once were. I am still beating myself up about it and feel like I am spoiling life for my family because of things like, days out being cancelled and just feeling plain awful.

You've offered such good advice regarding pacing myself and accepting myself, hopefully I will be able to do this soon !

It's also good to know about the amitriptine helping with sleep!

Take care

Amanda

 

12

Hi and thanks for you reply

It's such a relief to have people to chat to regarding fibro!

I was offered CBT from my doctor a while back, but that was when my diagnosis was depression and anx , so after the diagnosis of fibro I felt it was not needed, but hearing how it has helped you it might be worth going back and seeing about getting the ball rolling again, because I remember it took such a long time to get an apppointment through.

From what I am hearing one main thing that can help me is accepting this condition and not fighting it, so that will be my aim from now on !! This will be easier now I have found this community and have support and hopefully can offer support to you all!

Take care  and gentle hugs back !!

Amanda

 

13

Hello and thank you for taking the time to reply to my post

I am too am only taking co-codamol when I really need them, but they don't help with the fatigue and insomnia and foogy head.

Sometimes it's the fatigue thats the worst because when that hits I am good for nothing, like I have been unplugged !

I too am in a lucky position where I have been able to give up work for awhile, so I really was thinking that stopping work and trying my best to be stress free would help..but it has not !  That is one thing that has scared me, because I thought I could manage my symptoms.

I am picking up so much on this site though and I am hearing so much about accepting the condition .. maybe thats my problem !!

Take care

Amanda

14

Hi and thank you for replying to me ,

I have also tried gentle exercises and felt much worse, but the stiffness is becoming a major issue with me .. putting socks and shoes on is such a challenge these days lol..

do you find it helps with stiffness at all ?

Take care

Amanda

 

15

Pacing is not easy, but it really does help. Just be kind to yourself and focus on what you can still do, not what you can't, and enjoy what you can do! I sound as if this is easy, it really isn't, I struggle, but I am working on it! It is a work in progress, but I am getting there slowly, and so will you! 

Take care my friend, keep in touch.

Ceri (pilipalab4ch) 

16

Hi

So sorry to hear that you are suffering so much ! That all sounds awful and hats off to you for being so up beat about everything..that is a main thing I am picking up on through talking to people on this site..be positive and accepting. I am not there yet ..lol

I am also lucky that if I am feeling to painfull / stiff / fatigued and so on that my youngest is 15 ( and to be honest he likes to spend as little time as possible with his mum and dad ..lol) and can make himself something quick to eat until hubby comes in..so for that I am so grateful!!

Thanks for the info on the gluten free diet. I have read a lot about it helping fibro and I am considering trying it, what a shame you couldn't stick with it !! In what ways did it improve your fibro?

 

Take care

Amanda

 

17

Thank you !!

I am so glad I found this group, it really has made such a difference already to my positive mental attitude !

I know already I am focusing on the negative side of fibro and I see now that I need to change that. I still have trouble saying no to people and that really does have to change, as I have to accept I cannot do what I used to do without bad days and flares happening ! But if I say no then I feel so much guilt about it that  I am ill again anyway!! Tough one !

Hopefully we can be works in progress together and help each other through tough times!

Take care

Amanda

 

18

Hi Amanda. I am quite new to this site also. I am only partial diagnosed as I haven't been to see the specialist yet. But my gp and I are 99.99% sure I have fibro. I have done so much research and the more I look at stuff the more I want to shut off from the world. I was hoping to find good news but it's not the news I wanted ( a cure or long periods of remission) I am going through absolute hell at the minute. I was so bad 3 weeks ago I couldn't get out of bed, it was like I had a chronic flu. This is when I attended my doctor.

The bloods came back clear which I could of cried because I was dying and I kept been told there is nothing medical wrong with me. I started to believe it was all in my head. Then I suggested fibro and that's when I got my diagnoses (partial)

I have new symptoms every day I feel like a hyproconda my mother even calls me it.

No one understands it's a horrible Illness. I'm suffering from pains from the waste up EVERYDAY, my arms go dead just holding something for a few minutes even writing this my arms feel like I'm holding weights and iv only a phone in my hand.

I do sleep (as such) but some nights the pain is that bad it keeps me awake. Iv terrible dreams when i go for a nap during the day.

I'm on lyrica 50-125mg a day depending how bad the symptoms are. Since I have been put on them (since my chronic "flu&quot I haven't been bed ridden per se but i am a little better considering. Suppose we need to learn about our body's and learn copping skills. Iv bad anxiety and I'm a recovering addict so I was never normal but this just put the nail in my coffin. Can I cope with this to? I dono but there is nothing we can do only be positive and stay connected to people on this to help us along the way.

I'm here to support you along the way we are newbies to this so we can complain together. There is a light at the end of this tunnel and like everything else we will get there or at least accept it.

HUGS AND KISSES X

19

Hi Thanks for taking the time to respond to my post,

You sound so much like me. I also have a lot of trouble with my arms and struggle to hold a hair dryer or a mirror when I am putting make up on. Some days it hurts just to brush my hair..like I am holding up a ton weight. I also ache like chronic flu and for a couple of years before I was diagnosed I was always saying I am aching so bad I must be getting flu..but the "flu" never came and I was just constantly feeling this ache everywhere!

Fibro does make you feel like a hypocondric because you are always complaining about being ill. Since being diagnosed my anxiety has reduced and I think it is due to the fact I was worrying about every symptom (and with fibro there are so many to worry about) and worrying if you have something serious wrong with you and no-one is helping..infact no-one seems to even be listening to you anymore and then you know whats wrong and you calm down and can put so many worries down to fibro !

Thanks for the offer of support and I would love to help each other , since I dont know anyone with fibro I pour all my worries and woes onto my hubby and I feel he is getting a bit tired of hearing me now lol..although he is very supportive !

Keep in touch and fingers crossed we begin to understand just whay has hapened to us all !!!

Take care

Amanda

 

20

I'm the same even to dry my hair is a pain. At the start I put it down to been unfit, but I'm sure people that haven't exercised in years don't hurt holding a hairdryer. 

My my partner is been supportive but I also think he is getting sick of listening to me because iv always something new wrong with me. I'm sick of listening to myself so I wouldn't blame him if he was. 

I woke ok up feeling ok today I wasn't stiff and my eyes weren't sore so that's a good start to my day. I'm feeling positive that today is going to be a good day. I'll report back and let you know. I hope you have a good day xxx talk soon