Fibro?: Hi all I am new here and this... - Fibromyalgia Acti...

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Fibro?

Dondays profile image
14 Replies

Hi all

I am new here and this my very first post so be gentle :)) I have been dx with fibro about 5 years ago by my GP she pressed the pressure points gave me some citalopram and amytriptiline and sent me on my way.

I have always accepted that I have fibro and only 2 days ago I have been referred to a rheumy for the first time but I would like to explain my symptoms and see if they correspond to what others are going through.. I do have pressure point pain but I also have pain literally everywhere if u press all up my arms legs, my back shoulders neck is so stiff and painful and my buttocks aswell it's more of a dull ache than a pain but it is very debilitating I get shooting electric shock pain on my right ankle that comes on with no warning that literally measles me scream out in pain... My anxiety and depression is very bad at the moment and I could literally sleep ALL day long.... I have severe morning stiffness when i get up and my hands are so swollen and stiff I am married with 2 teenage children and I work every day but I am really really struggling right now...Does this defo sound like fibro?i have had every bloody test going and apart from a slight underactive thyroid there is nothing which I am obviously pleased about but it's making me feel like I am a hypochondriac and I know my symptoms are very very real. Oh and just quickly, 2 other things...

1/ I am finding work so difficult but can't afford to give up as we are in in debt as my husband works if I was to quit my job due to health reasons would I get benefits? I have never claimed before so i have no idea my husbands salary will not cover mortgage all bills and our debt aswell :(

2/ I quit smoking 6 weeks ago which I know is a good thing but I have never ever felt so bad.. I am late for work most days as I literally can't get out of bed and when I get home from work I just want to sleep where I ache and hurt so much can anyone relate to this from giving up cigs? I thought it as supposed I make fibro better?

Thanks for reading sorry for rambling and gentle hugs to all xxx

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Dondays profile image
Dondays
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14 Replies

It sounds exactly like a lot of us I have the swollen fingers in the morning the tenderness, my shocking electic pain is in my neck,

Firstly five years is a long time to cope with the pains.... I also query amitriptaline as its the only med you were give at the time and have battled through , for a few of us on here amitriptaline makes us sleepy and gives no pain relief... After 5 years a reveiw of your meds would be a good idea.... My night meds are dosulepin 75 mg . Really old cheap antidepressant but the 4 th one I tried and the only one that suits with no side effects and I sleep, with that I take the lowest dose of clonezapam a muscle relaxant and I nearly always get a good nights sleep... I have had fibro for 23 years and its only in the last 18 months I have got my night meds right... Unfortunately fibro is trial and error to what suits ... Many of us have had to give up work but if you get the right meds you may find you can carry on work... Please go to your GP as there are lots of different anti depressants to help with your fibro and depression.

Good luck and please post and letus know how you get on

VG x

Dondays profile image
Dondays in reply to

Thanks for your quick reply :)) I was prescribed gabapentin but I find I cannot function on these at work I work on finance so really need as clear a head as possible cos I'm dealing with money all the time, I have heard pregablin I s a good med but its expensive so GPs are reluctant to prescribe it, hence them chucking amytriptiline at everyone, cheap as chips..... Have u any any experience with pregablin and if I was to be prescribed the same night time

Medicene as u do u think that would help with te morning stiffness?

Thanks in advance x

I haven't tried pregabalin personally but others hopefully will pop in and give you their experience... Please ask your GP about this and explain about all you pain... Write a list/ letter and hand that to your GP to read as I have often been in such pain everything I wanted to say has gone out of my head and I have sat in front of my GP a snivelling wreck babbling incoherently ... If your GP isn't willing to try anything. Different/ expensive see if you can see another GP at your practice.... Fortunately being on here you can ask what meds people take and you can go in to the surgery armed with knowledge about what is out there, My Gp is great

and has tried me on lots of expensive meds only for them not to work... I just suit old cheap meds but that doesn't mean you have to settle for that if its not really helping. Please ask away on here we are only too happy to try to help and answer any questions

VG x

Mdaisy profile image
Mdaisy

Welcome to the site Dondays !

I am sure you will enjoy the forum chatting to others who have Fibro & have understanding, empathy and personal experiences to share. You will be sure to come across helpful information along the way too.

Please when you get chance have a look at our guidelines, Thank You

fibroaction.healthunlocked....

Keep chatting!

Emma

Maladjusted profile image
Maladjusted

Am currently still on rather low dose of Pregabalin. It takes the edge off the pain, but doesn't shift it. It might help more if I raised the dose, but although the evening dose doesn't have any adverse affects, the daytime ones can make me a bit disoriented, so until that settles down I can't increase. Obviously they don't affect everyone the same way. I know of people on much higher doses who have no side effects.

Might be worth a chat with your doc to see if you can give them a go, and maybe start by just taking them in the evenings, and try adding a daytime one at weekends to see how they affect you, and if they help.

Dondays profile image
Dondays

Hi yes that sounds a much better idea to try them in the evenings and on weekends and see how I get on, thanks x

phlebo123 profile image
phlebo123

Hi and welcome :) Firstly congratulations on giving up smoking! It will probably take a while for your body to adjust -- are you using nicotine patches to help? Secondly you are definitely not a hypochondriac. -- the symptoms you are experiencing are "real" but it is difficult because they are invisible to everyone else. Regarding work -- could you maybe reduce your hours ( I now work part time 12 hrs/week and occasionally extra days when needed) so at least you are still earning some money. Perhaps speak to your employer about reducing your hours. Do your children help you around the house? Get them to help out with tasks. Have you explained about fibromyalgia to them? They are probably into computers so get them and your husband to read about it. It's hard for them to understand when you just look the same as you always have. The secret to "surviving" is to learn how to manage/pace yourself. I found the booklet found on pain toolkit.org very useful.

I experience a lot of your symptoms -- stiffness when getting up in the morning. Pain in shoulders. Random sharp shooting pains. When you go see the rheumatologist take either a friend or family member along with you for support and make a list of all your symptoms to take with you.

Don't just struggle along by yourself -- it helps to share your concerns. Take care xx

hamble99b profile image
hamble99b

I ad problems foryears but my thyroid results were always slightly under. One very hot summer, I was wearing an aran cardi as I was cold.thankfully my rheumi referred me to the right consultant who put me on a trial period of thyroxine - within days I was like a new person!

ask for areferral.

sandra.

Hi, apart from ankle pain, I sound much like you. I was only diagnosed by my GP in DEC'12 but he referred me to a rhematologist straight away but my appt isn't until may. I take amitrypline at night took a while to get the dose right and take painkillers if I need them which hasn't been so much lately. I also have under active thyroid which is under control.

Maybe have another chat with your GP your thyroid being even a little under active will make you feel worse along with Fibro,

rowantree profile image
rowantree

Wow. Its so interesting to hear others have the random sharp excrutiating shooting pain! Mine is in my right ankle too. It makes me cry out. Very embaressing as it comes on very suddenly, shoots a few times then goes completely. Anyone also get sudden low blood suger? I often suddenly get the shakes and have to eat to get rid of them. Not necessarily hungry.

Allpainedout profile image
Allpainedout

Hi there , its so sad to hear the utter panic in the words of someone trying to make sence of this terrible fibromyalgia !!!! All the different pains that occur mke you feel as if your going mad !! But all of the pains mentioned I have and I've had fibro 13yrs !!! In the beginning it a new pain a wk you feel so exausted and the added worry of claiming benefits puts massive strain on your state of mind , this causes depression Whitch in its self causes problems in relationships , the feeling of not being believed is heart breaking !!!!! It leaves you feeling loney !!!!! Finding strength to deal with all these problems is tough but when one at a time things get sorted out you then can concentrate on looking after number one !!!! Don't be hard on yourself I'm telling you it takes a very sepcial person to cope with it all and that special person is you !!!!!!! Take time to pat yourself gently on your back when ever you deal with a problem , lern to say no !! You can no longer be the one people gets to do everything it's time they paid you back and helped you !!!!

There is a life with fibro its a different one but its a life !!!! Take care out there xxxx

Welcome to the site xxx

All sounds familiar. I hate the shooting nerve pains. For most I find heat helps. Thank god for wheat bags !

I gave up smoking too, about 4 years ago now. My body craves what it can't have .tobacco is a nightshade. I can't have potato either lol. I think the body objects when we cut out a toxin. I is better eventually.

Its very wrong we get this diagnosis and then no help or support.. glad you've found us x

Jjudith profile image
Jjudith

Why don't you go to the Citizens Advice to see if you can get some advice on the debt problem? At least with giving up smoking you will have less expenditure - I don't know how anyone can afford to smoke these days - well done you. Hope hubby gave up too!

Dondays profile image
Dondays

Yep hubby has given up too... :) I have literally spent the past week in bed on and off guessing this is a flare I get it periodically maybe once a year where I feel I can't function... Couldn't face the food shop so ordered online I haven't it the energy to do my housework and ironing but my husband has been at work since 4am do somehow I have I muster the energy I do the cleaning for when he gets in, no one wants to come home to a tip.... I could actually cry today through pain and wanton a cigarette :( x

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