Arthritis Forum
Home.

News.

Personal Stories. Links. Message Board.  
Arthritis Forum  
Add your comments to this topic Start a new topic
Date: 15.07.2011
From: Lee

Subject: Fibromyalgia and Pregabalin

I know some on here have Fubromyalgia as well and seeing as ive finally been diagnosed I was wondering if there are any tips that help different to arthritis stuff.

The specialist said dont bother with anti inflammatorys or co-codamol as wont do owt so im thinking i might have to go back on the tramadol.

He has prescribed me Pregabalin 1 tab 75mg a day for a week then raising to 2 a day and he said might end up being double that.

He did mention two other drugs if this one doesnt work. Ive taken my first tablet tonight and made me feel wierd and panicked as was expecting something but other than that made my chest bit heavy and knocked me out watching tv.

Has anyone tried Pretabalin?

I know its mainly an arthritis forum but thought i would ask anyway. I still might have some PA so will be relevant lol

thanks for all the support its one hell of a relief emotionally to actually be told what i guessed it was
reply | back to forum

Date: 16.07.2011
From: kirst

Subject: Re: Fibromyalgia and Pregabalin

have RA and fibromyalgia. one place i think might be useful is the Fibromyalgia asocciation site, there is also one called FibroUK. Have a look as there is loads of advice specific to fibro and differant things which help.

Ive been on Gabapentin and then tried Pregabalin and nether of them agreed with me but i know others who have been on them and have found massive improvements in pain, Fatuge ect. Also Amytriptaline is good for pain and as an aid to sleep as one of the side effects is to make you dopey. Pain killer wise i take 2 paracetamol and 2 tramadol... you may find that after a while you may feel as tho they arnt working as well as the were at first, if this happens swap the tramadol for 2 codeine instead and you will find that they seem to work again. I was advised this by the pain clinic so speak to your doc about it.
With the diagnosis of fibro docs will try their damndest not to prescribe anything on the morphine side of painkillers as there is a slight risk of becomming too used to them and needing them however there are another type you can try but cant remember the name of the group so again, ask your GP. You can never ask too many questions as it can take a very long time before you will find things which work with you.

One last thing i will say is when you do too much you will feel it one-two days afterwards so try to find a balance between activity and rest.
Hope this has helped and sorry for the mamoth reply x
reply | back to forum

Date: 16.07.2011
From: KayJay

Subject: Re: Fibromyalgia and Pregabalin

I have Amitriptyline and Gabapentin - both seemed to have dampened down the effects of Fibro. Lee you must have a good specialist - mine just said there's nothing you can take for Fibro !! It was my GP who gave me both above mentioned meds. Must agree with kirst about overdoing things - you sure feel it the next day and I'm still very tired all the time but the constant pains have decreased with the Gaba's.
reply | back to forum

Date: 17.07.2011
From: Lee

Subject: Re: Fibromyalgia and Pregabalin

The specialist suprised me too esp after the year of false information from my York Specialist, so travelling all the way to Rotherham and for him within an hour to say Fibro, give me meds and 2 tests to come I was very happy and still in bit of shock as i expected the same rubbish as i was getting from York.

I know I said I didnt want to go back on tramadol but I can see that will be something I will take again
reply | back to forum

Date: 17.07.2011
From: KayJay

Subject: Re: Fibromyalgia and Pregabalin

Not that far from me Lee - my Rhuemie is in Sheffield. Hope the meds work for you - as for me I wish I had been referred to the Rotherham one ;0)

Oddly enough although there are 2 Hydrotherapy Pools in Sheffield I was referred to the one in Rotherham by the Physio !! Crazy .......
reply | back to forum

Date: 17.07.2011
From: Lee

Subject: Re: Fibromyalgia and Pregabalin

i have to go back to Rotherham for my bone test and Sheffield Royal for my nerve test.
reply | back to forum

Date: 17.07.2011
From: mads

Subject: Re: Fibromyalgia and Pregabalin

Hi Lee
Delighted to hear you got some results, now you can claim back some control.
reply | back to forum

Date: 18.07.2011
From: Lee

Subject: Re: Fibromyalgia and Pregabalin

only side effect im getting at the moment is my shakes/tremors feel worse

Suppose its just a side effect while my body gets used to the drug
reply | back to forum

Date: 20.07.2011
From: Lee

Subject: Re: Fibromyalgia and Pregabalin

Well i've had to go back on the dreaded Tramadol and starting very slow and low dose.

Got my appointment for my radioisotope scan??? anyone had one as pretty nervous about it
reply | back to forum

Date: 21.07.2011
From: Lee

Subject: Re: Fibromyalgia and Pregabalin

Forgot to add..

DWP are crap, they told me to apply for Income Support but as Partner works im not eligable....so why bother and because it didnt go through they didnt bother sending my paperwork to council.

So had to go in today to claim HB and CTB. Still wading through DLA forms just in hope
reply | back to forum

Date: 21.07.2011
From: mads

Subject: Re: Fibromyalgia and Pregabalin

Lee
Keep working on the DLA - i got a letter this morning saying i am entitled to low rate mobility and mid rate care. I gave a truthful graphic account of my life from am to pm (even the really embarrassing personal stuff) and got the citizens advice bureau to look over it before i sent it in. I had not got an OT or physio at that stage so i didn't have a supporting statement. I did have a good GP who asked me to come in to go over the form that was sent to her to make sure that she wasn't missing anything in regards to my day to day life. You are entitled to it as you have a condition that is causing you major difficulties regarding your mobility and living conditions. The good thing is that it will be backdated from the moment you requested the form. Jill had real good information on the forum a while back re filling in the form - i am sure you have probably saw it. But do persevere, it should be worth it. I am glad to see you are finally getting some answers, hopefully the drugs will agree with you and make things better.
reply | back to forum

Date: 21.07.2011
From: KayJay

Subject: Re: Fibromyalgia and Pregabalin

Lee I've had an Isotope scan and it's nothing to be worried about. They just inject you with the stuff then you have to wait and then they scan you. You have to drink a lot so it works round the body. It's non invasive and if it is the same as I had you will be fine :)
reply | back to forum

Date: 21.07.2011
From: Lee

Subject: Re: Fibromyalgia and Pregabalin

Just make sure I dont sit near anyone on train or go in a dark room and glow lol

Seems things moving swiftly as got my gastroscopy aswell next month which im not looking forward to swallowing.

Fingers crossed all get sorted
reply | back to forum

Date: 21.07.2011
From: KayJay

Subject: Re: Fibromyalgia and Pregabalin

Had that as well Lee !! Good Luck will keep my fingers crossed for you !
reply | back to forum

Date: 21.07.2011
From: marlene

Subject: Re: Fibromyalgia and Pregabalin

Lee, when i had the scan you are havig it answered all the questons as to why i was in so much pain. Hope you get positive results. Take care.
reply | back to forum

Date: 22.07.2011
From: Lee

Subject: Re: Fibromyalgia and Pregabalin

My B12 was low last year and its been low for the last 2 test and im sure this recent one is lower than the one last year.

The GP keeps saying its fine nothing to worry about but surely if my B12 is low all the time then I will need injections??
reply | back to forum

Date: 22.07.2011
From: marlene

Subject: Re: Fibromyalgia and Pregabalin

This depends how low your B12 is. Are you a veggie?? Most B12 comes from meat eggs and cheese. Ask your GP about a supplement. Sometimes a supplement is all you may need. Lee try not to worry too much, it is hard i know but hopefully you are on the road to finding out exactly what is going on with you. I hope it all comes to-gether soon for you, as you know i have been following your story from day one, i am truly pleased your new hospital is getting on with it. Take care and don't forget keep smiling, sending best wishes your way.
reply | back to forum

Date: 22.07.2011
From: Lee

Subject: Re: Fibromyalgia and Pregabalin

Nah not a Veggie but dont eat a great deal of eggs or meat these days. Out of all 3 cheese is prob what I eat the most.

They said the Gastro will look into it.

Just need to get over the daily headaches and ill be fine.

Thanks
reply | back to forum

Date: 22.07.2011
From: marlene

Subject: Re: Fibromyalgia and Pregabalin

Have a good week-end X
reply | back to forum

Date: 28.07.2011
From: Lee

Subject: Re: Fibromyalgia and Pregabalin

Had my Radioisotope today and gotta say was wierd.

Had injection at 1 and then had to drink and pee my way through 3 hrs till examination and scan.

They did the first scan right after fully clothed, i was still wearing my trainers and beenie hat.

The 2nd test fully clothed again just had to remove belt as metal(even though buttons metal too))

What did confuse me was after the scan on both times they tied my feet together and scanned them?

Any ideas why they had to be strapped together? I understood why i had my hands scanned but they were free

So 1 scan down and just Gastro and Electric to go.

Hope everyone is well and this heat isnt playing havoc with everyone else as it is me

take care
reply | back to forum

Date: 28.07.2011
From: marlene

Subject: Re: Fibromyalgia and Pregabalin

Hi Lee, good news scan out of way, they tie your feet to-gether in case you move, our bodies twitch involuntary when asked to lay still. They also compare bones in feet and the alignment. You should always ask whats going on, it makes you feel better about the whole thing, having said that when i had my scan this was all explained. I know what the Gastro is what is Electric or am i being thick??? The weather is driving me nuts it doesn't know what it wants to do, therefore my pain meds are all over the place. Lee take care and hope this weather settles soon for all of us.
reply | back to forum

Date: 28.07.2011
From: Lee

Subject: Re: Fibromyalgia and Pregabalin

the electric is nerve conduction tests in my arms.

Weather is killing me at and face and eyes swollen with it
reply | back to forum

Date: 28.07.2011
From: marlene

Subject: Re: Fibromyalgia and Pregabalin

Oh OK! Yep i know that one. Why are your your face and eyes swollen are you sure thats not an allergy???? Sorry to be negative but eyes swollen maybe hayfever also. Lee you really seem to be suffering bless you!!!! Hoping when all tests done all will be sorted for you. Take Care X
reply | back to forum

Date: 30.07.2011
From: Lee

Subject: Re: Fibromyalgia and Pregabalin

my gp has basically told me to get upto full dosage of pegabalin asap so over next 10 days upto 300mg and if naproxen and tramadol dont work then stop taking them.

so in the meantime what should i do. both hand and legs feel swollen and sore and joints very stiff and i cant seem to get and relief and im supposed to be going away next thursday and atm cant hardly do anything as too stiff, swollen and sore

some of it i suppose could be heat and pollen and ill try and antihistimine but other than that im screwed
reply | back to forum

Date: 30.07.2011
From: KayJay

Subject: Re: Fibromyalgia and Pregabalin

Sorry to hear you are suffering Lee. Hope you will be able to get pain relief soon for your Hols. I've been very stiff the last few days as well - could it be the weather ? Hope the Electric test goes well - I've had the Electro Conduction Test as well but on my legs.
reply | back to forum

Date: 30.07.2011
From: marlene

Subject: Re: Fibromyalgia and Pregabalin

Lee, ring your gp and ask for suggestons for pain med. Hope you feel better by Thusday a break will probably do you the world of good, but of course you need to be able to keep pain and swelling under wraps.Take care hang in there
reply | back to forum

Date: 31.07.2011
From: Lee

Subject: Re: Fibromyalgia and Pregabalin

Break might be off as my nan is losing her short battle with stomach cancer which was only diagnosed about 5 months ago at the most.

she is currently in a single hospital room and the drs have said nothing can be done.

Ive already said my goodbyes etc as I live so far away and been expecting it for about a month so its not too much of a shock.

I dont know if I should go away now knowing whats going on. I cant do anything but then again should I be going away to enjoy myself at this time.
reply | back to forum

Date: 31.07.2011
From: KayJay

Subject: Re: Fibromyalgia and Pregabalin

Lee do what your Nan would want you to do - which is enjoy yourself with no regrets. My Mum has been in a Nursing Home for 8 years now with a rare form of Dementia and my sis and I went on our 1st holiday together for about 8 years. On the last day of our short holiday [ 1st July ] we got a call from the Nursing Home to say her toe had turned blue. She now has gangrene in her foot and the surgeons will not operate they will only give pain relief so it's just a matter of time and it's horrible. They wouldn't even admit her to hospital and is still in the care home.

It's a terrible time, I know , but I couldn't help feeling guilty for going away especially when she fell ill. But I know she would NOT want me to feel like this and would be the 1st to say - get out there and enjoy yourself - life is too short.
reply | back to forum

Date: 31.07.2011
From: Lee

Subject: Re: Fibromyalgia and Pregabalin

i understand what you are saying and yes she wouldnt want me not to do something because of her and she knows how bad and ill ive been in the last year to need a break with friends.

I suppose i will just see what happens and take day by day till thursday and see
reply | back to forum

Date: 11.08.2011
From: Lee

Subject: Re: Fibromyalgia and Pregabalin

Havent posted in while so thought I would update people.

Pregablin 300 doesnt work. I went away at weekend and not been able to move for a week now as ive been in so much pain and agony.

Dr sais as Tramadol doesnt work anymore they are reluctant to give me something else.

On top of that im not eligible for any help from anyone financially.

DWP said no Income Support and because my GF is just over the threshold the council is giving me £19 a week housing benefit going down to £5 a week next month.

So basically will prob end up in a lot of debt and homeless as they think my GF can support both of us.
reply | back to forum

Date: 12.08.2011
From: marlene

Subject: Re: Fibromyalgia and Pregabalin

Hi Lee, sorry to hear thhings not too good for you. I know how hard it can be living off of one income. When i gave up work due to my health i had to be careful with the money something i wasn't used to any more, the kids had all flown the nest.Luckily i haven't fallen in to debt you just have to be more thrifty. Not always easy i know. Are you claiming sickness benefit from your sick notes your gp gives you???? I don't know too much about it but you fill the back in and send them off. Never done this myself but i have heard somewhere this is what you have to do if not getting paid from work. Lee when do you go back to your consultant? It seems to me you are in need of pain meds of some description sooner rather than later. This weather all over the place is not helpfull. Lee always pay your rent first you must keep that roof over your heads, then sort the rest from there. I am sending you and GF all my best wishes take care
reply | back to forum

Date: 12.08.2011
From: Lee

Subject: Re: Fibromyalgia and Pregabalin

Thats the problem im getting 80quid a week and the council says thats enough but im still a couple hundred short for rent.

Bank wont put hold on my loan or credit card for 2 months. they want me to miss payments, put black mark against my name for 6 yrs and send it to their solicitors.

I hate the banks and the way they screw you when ypu want their help.

My GF is earning min wage and they say its enough for 2 to live on which is total crap. They dont have a grip on reality
reply | back to forum

Date: 12.08.2011
From: marlene

Subject: Re: Fibromyalgia and Pregabalin

Your loan and credit cards i assume are with your bank, are you sure you didn't take out insurance for sickness etc, banks don't usually let you have these products without insurance. Check on your credit card bill(it should state on it). check your loan paperwork. Credit cards are usually charged monthly insurance. Loans not to sure. You need to make sure 100% you are not being false fed info from your bank. Go and see your bank manager if you feel well enough i would drag myself there. Lee your bank should be pulling out the stops for you its not any help to them if you fall into the red. They also have a responsibilty towards you when you are sick. Life is real tough at times bbut you will come out the other side. Take Care
reply | back to forum

Date: 15.08.2011
From: Lee

Subject: Re: Fibromyalgia and Pregabalin

Back at GP today as Pregabalin at 300mg is making me high and a zombie. Not been able to function for weekend and need to get back to work asap for money.
reply | back to forum

Date: 19.08.2011
From: Lee

Subject: Re: Fibromyalgia and Pregabalin

Well I had my Gastroscopy with just the throat spray and not sedation...what an experience that was...def something I dont want to do again..lol glad it only took 4 mins.

Test came back normal and just waiting biopsys which they think will be fine too.

So stomach swelling must be IBS?

Changed from Pregabalin to Gabapentin to see how they go.

I know for 1 thing when I took some co-codamol and 45mg of Mirtazepine tonight my head went really sleepy and woosy which is good as I can sleep for once this week.

Hope everyone is well. Missed talking to people on here.

Got my never conduction test next week so prob report back then
reply | back to forum

Date: 19.08.2011
From: marlene

Subject: Re: Fibromyalgia and Pregabalin

Gastro not nice only get sedation if you kick off. My hubby was told he would be sedated but wasn't. He looked ghastly when he came back to his bed. Hope you wasn't too bad after. Good sign all is well. Glad to hear you have had a better result from meds and can actually sleep. Hope all well with nerve conduction test. Don't forget to let us know how you get on. Take Care !!!!
reply | back to forum

Date: 19.08.2011
From: Lee

Subject: Re: Fibromyalgia and Pregabalin

DLA turned down my request after just looking at my booklet and not speaking with any medical staff or hospital.

I rang them and they said You can walk slowly so we dont think you are entitled to anything.

I queried how an admin person can make that decision with no medical knowledge or speaking to my GP and 2 Hospitals. They will take another look but not holding my breath.

So basically not entitled to IS,HB,CTB or DLA atm so back to living on £81 a week

Absolutly disgusted at the level of help im getting
reply | back to forum

Date: 23.08.2011
From: Lee

Subject: Re: Fibromyalgia and Pregabalin

Got my B12 injections today finally after a yr of low B12.

Also my nan died this morning of her short fight with cancer which has been expected for the last cpl of months so least she is at peace now
reply | back to forum

Date: 23.08.2011
From: marlene

Subject: Re: Fibromyalgia and Pregabalin

Firstly let me say sorry to hear about your nan, you are right Lee she is at peace God Love Her. I am sending best wishes to you and all your family.
Secondly can i say so pleased to hear you have had your B12 injection at long last.Take Care X
reply | back to forum

Date: 24.08.2011
From: Lee

Subject: Re: Fibromyalgia and Pregabalin

Felt ill after B12 but think that was combination of bad news etc.

Had my nerve conduction test today and was quite painful at times just got to wait 2 weeks for results now.

DR said the specialist said if not arms and legs possibly spine/neck causing the problems?

More tests then?
reply | back to forum

 

Add your comments to this topic
Subject:
Please type your comment here:

Your name:
email:

3+10=
(This sum is to help prevent automatic spamming through this page - thank-you)


top

Site design: T - Creative Home | News | Personal Stories | Links | Message Board