HELP,: Iv got a DOCTORS Appointment at... - Fibromyalgia Acti...

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HELP,

lovelyredhead profile image
16 Replies

Iv got a DOCTORS Appointment at 10 .30 to day ,iv not been looked after for 8yrs with my ME and FIBROMYALGIA, all I'm on is GABAPENTIN, and AMITRIPTYLINE. Can you all LET ME KNOW WHAT YOU TAKE PLEASE, JUST THE DRUGS NAME And WHAT'S IT USED FOR.PLEASE HELP ME ,iv been BEDRIDDEN for 2yrs cause of these conditions ,I used to work 12 hrs a day ,6 days a week ,before I got ME in 2000,then as you all know ,I got hit by a car giving CPR ,I even carried on working after that,then ,2 more car accidents up the rear ,and a Nervous Breakdown put stop to that ,I now have Epilepsy ,Heart problems due to Heart attack and Stroke ,Asthma ,Purturity Tumour, Under active thyroid ,Diabetics ,Bipolar ,Disfuntional Cervical Spine ,an Damage to my Spine in 3 places,Migraines ,Damaged Bladder so I have to be Catheterised ,Hearing lose to my left side ,Lope Sided Face due to Stroke,Balance an Tremors ,Food Allergies ,Skin Allergies ,Irritable Bowl Syndrome.

ME ,FIBROMYALGIA. PAIN in my JOINTS and BACK ,NECK HEAD .Other than that I'm Fine ,OW ,iv just turned 50 on Sunday ,so everything else is going south or Drooping ,But PLEASE LET ME KNOW WHAT YOU TAKE FOR YOUR ME ,FIBROMYALGIA .THANK YOU SO MUCH

FROM THE BOTTOM OF MY HEART.

LOVE AND HUGGS.

JACQUI xx

If any of you live in CLACTON on SEA ,I would love to meet you,have a cuppa .

I really do need to meet and make some friends ,xx

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16 Replies
msBrightside profile image
msBrightside

Hi, That is alot to deal with, sorry to hear you've been neglected by doctors. It is a hit or miss with them. You should be proud of all you've got through.

I take gabapentin, naproxen, & paracetamol daily sometimes topping that with cocodamol when I need to. I used to take amitripyline but it made me severely dizzy and too sleepy.. Though it helped regulate sleeping patterns and helped with mood & pain.

BlueMermaid3 profile image
BlueMermaid3 in reply tomsBrightside

Hi love

Good to see you :)

How are you doing?

Just thought I would mention that if you take Amitryptyline between 6&7pm (no later) this greatly reduces the groggy sleepy feeling you can get in the mornings.

If it was helping you with mood and pain it might be worth considering trying it again?

Take care

Lu xx

msBrightside profile image
msBrightside in reply toBlueMermaid3

Hey lovely,

Not too bad very sleepy, I'm going to speak to my pharmacist tomorrow.

You're right I should maybe consider going back on amitripyline it was agreeing with me better than this.. Hope you are getting on okay x x take care

Ian123 profile image
Ian123

Can feel your frustration with treatment received so far but as you will know each of us is unique within the diagnosis and co morbid conditions with how we react to each medication/ mix of medications. I cannot tolerate Amitriptyline yet it helps you is only a for instance of what works for me not necessarily been the best treatment for another individual.

Isolation while finding coping strategies is difficult keep in touch with this community when your able :-)

lovelyredhead profile image
lovelyredhead in reply toIan123

Thank you for your reply ,I wanted the names of the Drugs ,so that I could discuss with the Doctor which Drug would be best for me ,but as I have no knowledge of the Names of the Drugs ,I'm going in Blind ,which I don't like ,I'm not good on Amitriptyline ,iv all ready come off it ,then my Doctor put me back on it ,it is used as well for bed wetting so it causes me a problem with my Bladder now ,but when I told my Doctor this he PoPoed me and said don't be DAFT,well if you read the leaflet that comes with the drug ,it says in black an white used for Adult bed wetting. I'm a person that likes to READ up on the DRUGS before ,so I know if they have side affects,my old Doctor used to read up on the side affects before he gave me the prescription. This Doctor gives me DRUG'S that I'm ALLERGIC to after I get the prescription, what a WASTE OF MONEY FOR THE NHS.

Any advice on the DRUGS would be so helpfull then I can check on the internet for Advers Reactions,as I am very sensertive.

Kind Regards.

JACQUI x

Mdaisy profile image
Mdaisy in reply tolovelyredhead

Hello lovely redhead,

You can find information about treatments for Fibromyalgia here;

nhs.uk/Conditions/Fibromyal...

Can I just ask you mention a drug & bed wetting is that Duloxetine ?

Best Wishes

Emma :)

Community Coordinator

lovelyredhead profile image
lovelyredhead in reply toMdaisy

Hi ,Emma ,Thank you for your reply ,its Amitriptyline the bed wetting Drug ,if I go over ,20,mg my joints swell up with fluid ,then I have to take ,furosemide,I'm on 47 tablets a day ,so iv got to be careful ,both my parents have got to be on COPD which is because there kidneys are failing and my brother has had 2 Kidney Transplants,and my parents also have had Open heart by pass surgery done ,and there both Dibetic ,so you can see why I'm worried what Drugs they put me on ,its a.mind field ,and none of my Family have ever Smoked or Drunk Alcohol and we have all ways eat healthy cause my dad was a greengrocer, just have bad Jeans ,but my nan who Smoked and Drunk lived till she was 91 and didn't have anything wrong with her at all. Not fair ,

Thank you

Love and Huggs

JACQUI xx

JanetM profile image
JanetM

Have you thought about asking to change doctors? It sounds like you have a Dr who takes risks. There are many drugs that cannot be taken together. Amytrypteline, for instance, cannot be taken with a number of other medications. Make sure that your Dr is taking the necessary precautions not to make you worse than you already are.

You are obviously coping with so much and you are amazing. Sending many good wishes and hoping your Dr does the right thing. xx

lovelyredhead profile image
lovelyredhead in reply toJanetM

Thank you Janet M. It's awful when I have to check my meds all the time ,and 90%of the time they have to be changed , I'm on 49 an 53 tablets a day ,last year they put me on ,Pregabaline ,it reacted so bad with my BIPOLAR. It made me really Angry ,they told me to stay on it. I kept telling them what it was doing to me. In the End went mental smashing up all my cups and plates ,I started to have a Angina attacks ,in my confusion ,I called the police ,I NEVER hit ANYONE ,told my partner to go out side when it started ,I got put in the POLICE CELL for 25 hrs with no food or drink ,and I had a ANGINA ATTACK and they didn't call an Ambulance so I could have had a Heart attack and no one would be able to tell cause o didn't get the special blood test done in time. ,an they let me go with no charge ,o even had the Cheif of Police call me while I was in the cell and he said to me ,we have never had anyone in our CELLS that's been so I'll ,since that day ,iv not left my home. Iv not had any sorry letter from him ,and I came out with a Kidney infection that iv still got,because I wasn't catheterised,

So YES I must change my Doctors. The shame I feel for being Arrested will never leave me or my parents who are 78_and very I'll.

That is how I get treated all the time ,no Doctor will Listen to me ,and iv had ,10 major operations as well ,8 car accidents none my fault .and iv never been paid any compensation because I'm big boned and above the weight i should be ,They don't think she's got size ,7 feet an had a Purity Tumour which makes your bones and muscles bigger.That's another moan ,ha ha.

Love and Huggs

JACQUI xx

in reply tolovelyredhead

One of the things been reading up on is Progesterone helps with bi polar it's one thing many are never checked for they check E and T levels.

Also helps with PMT! and prostate problems!

TheAuthor profile image
TheAuthor

I genuinely hope that your GP appointment went well for you and that you had a chance to discuss medication issues with your doctor. I want to sincerely wish you all the best of luck.

All my hopes and dreams for you

Ken

Personally the only place i'd put amytrypline is in the area marked "dustbin" as causes so many other side effects esp with other drugs(there is a very dark area concerning that drug but not going into on here)but if you do have to take vary the dose constantly because the body get's used to it so have the side effects without any benefit to you.but one thing for people that are/have been on it is to get hormone levels checked as in many females it increases your T levels in males lowers them!

Get heart palpitations plus bladder problems friend had what thought prostate problems as pee/ing all night so worried as dad has/had P cancer bad but came of it and all cleared up.

Many meds stay in your fat layers then when you take another drug they combine it's one thing not many ever consider so if say take drug A this month then drug B in month or so time drug A is still there but also many chemicals get into your fat or bones

Like others are saying change your Quack many are Dinosaurs should be put out to grass or in Jap speak given a seat by the window!

Was told if you want help with Fibro get a doctor under 30 or atleast 40 !

Many older one are just that too old stuck in the snake oil ages where as younger ones are clued up on newer methods.

But another thing is have a sit back on meds as many take far too many which are counter contrariety as overlap/interfere with each other plus man are given to you as an easy fix like giving kids sweetie's but theres a kick back for quack!

I don't take any meds now moderate with foods/drinks and sleep(trying)and rest.

learn to read your body feel better for it plus steer well clear of chemical foods check ingredients with A sweetners/MSG/etc etc.I eat very little bread and def no mothers muck types and try to steer clear of preservatives(stays in bodies) they found now when exhuming that bodies arn't decomposing like should do!

Think it's going to be an area that is going to become more known about (if not squashed by Chem companies?)causing obesity as France eats lot's of bread but rarely see fat french people! maybe something to open your eyes too plus a link in other illnesses?

Steer clear of any fizzy drinks too apart from the acids etc it causes many health problems with bones for one as depletes calcium levels and many stop body getting calcium/magnesium from foods which is in your Vit D levels.

But as they say we are what we eat!

Tra70 profile image
Tra70

Hi I'm new to this but my gp gives me morphine tablets and oramorph medicine for break through pain also diazapan to relax the muscles, plus gabapentin. This combination really helps my fibro.

lovelyredhead profile image
lovelyredhead in reply toTra70

Hi Tra 70, Big Thank you ,I'm on Gabapentin 900,mg every 8 hrs and Dihycodeine ,an Paracetamol ,I have that if I'm in bed all day ,but if I have to walk about or have a SHOWER,I take as well Slow release morphine ,but it affects my BIPOLAR ,makes me really Argumentative, not good ,but I also found it didnt take the pain away that well ,iv got a Damaged Spine and hip as well from when I got hit by a car giving a man CPR ,that's what caused the stroke as well.

Did your hair get thinner while on Gabapentin ,mines got awful ,so thin on top.

Thank you so much for your message .

Big Hugg. Love .

JACQUI xx

nadine111 profile image
nadine111

know this is too late to help with the appt. but please, please take one med at a time so will know what is working vs what isn't and what is causing side effects. i once tried several meds at a time never realizing could be such a mess. hang in there. you are doing the best you can. there is nothing to be ashamed of. you did the best in a difficult situation. would think people would be impressed with the way you handled it. best of luck.

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