First time writing.

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First time writing.

Postby pwinstanley » Sat Oct 26, 2013 2:47 pm

Hi Everyone. First time I've talked about Fibro. When I have a good day things seem great. But they are few and far between. When I have a good day I try and make the most of it like it's the last day in the world. It makes me feel great. Then I suffer for it, sometimes from a few days up to a week or more. Unfortunately I'm then seen as lazy or others make it obvious that they are having to do everything while I'm sat there or trying to rest. I'm beginning to accept that I can't do things like I used to but I know that's hard on my family (I have a 14 and 9 year old sons). My wife tries to be supportive, but she must feel like she's living with an elderly dependant (and I'm 38). Pain killers take the edge off but my GP seems at a loss as where to go now. I'm on Meloxicam, Dihydrocodeine, and Pregabalin. Like a lot of Fibro sufferers I get the feeling that they (GP and family) think I'm just a whinger who's attention seeking. They don't see the horrible pain that eats away at me. Outside I look normal. Sorry to rant, but who else do you rant to. Peter

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Re: First time writing.

Postby petareynolds » Sat Oct 26, 2013 5:23 pm

Hard for non-fibro sufferers to understand... they claim to but how could they? If they get flu they stay in bed for days... we have to carry on like that every day. Children don't understand at all.

How are you getting on with pregabalin? I'm on Fentanyl, Naproxen, Zapain and Amiltriptyline... consultant just decided to put me on either pregabalin or gabapentin, but forgot which before I left the hospital, and gp still hasn't given it to me!
Location: South Bedfordshire
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Re: First time writing.

Postby Smurfy » Sat Oct 26, 2013 5:32 pm

Hi Peter, I know how you feel I'm 41 and feel about 60 at the moment. I have a lovely husband and two great teenagers but like you if I overdo it I suffer and then feel I have to apologise all the time for relaxing too much. I work 30 hours a week and my hubby is always telling to put my feet up, but I'm just not used to it! I,ve just come off Gabapentin and wld be interested to here how the Pregabalin works for you.
Hang in there :-D
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Re: First time writing.

Postby painprincess1 » Sat Oct 26, 2013 8:48 pm

welcome peter, let me start off by saying this is a great place to have a rant.to find ppl who no just how you feel and yes we have other men who come here to.maybe when you feel good you should try to not over do it. then maybe you might not be off your feet for so long.its not easy i do the same i think great i feel good lets get the house in order .only thing is with 4 kiddies i cant take any time off.mid you i feel worse if i dont move .its so hard to explain to ppl isnt it .i sometimes think it takes more out of you trying then to say nothing at all lol.i do hope you at lest find some friends :lol: here to help you along xxxx
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Re: First time writing.

Postby pwinstanley » Sun Oct 27, 2013 1:10 am

Thank you to all above. Really appreciate your words of support as not used to it. I used to be on Gabapentin but came off it. I thought it was an evil drug! There are lots of warnings to say it can make you depressed and feel suicidal. It also says to let other family members know as you may not be aware of how low you might get. Well to begin with it was a super drug, and I was amazed at the good effects. I did, however, get super depressed and felt suicidal. It was a colleague at work who actually helped me. My wife was useless (I do love her by the way) and my GP never at any point monitored me. I was then taken off the Gabapentin and changed to Pregabalin and started on some much needed anti depressants (Prozak - also called Fluoxetine). The Pregabalin has been brilliant and when it's in my system works well. I do notice it immediately when it's wearing off. I've said to my GP about referring me to a pain team but he says there's nothing that he can't do- is he right? Nice to know there's others out there- thanks.

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Re: First time writing.

Postby whoami » Sun Oct 27, 2013 4:48 am

Peter, I am sorry to have to welcome you here because then I know you are suffering from fibro. It is nice to know you
have reached out to others who understand.

I would keep asking for a referral to a pain clinic. Ask your GP if they can offer you any other type of treatment or
advice . Your Dr seems to be supportive which is great.

Peter, I know it is hard but don't feel guilty because of your illness. You did not cause this and you can't control it. Try
To remember to pace things and then you will enjoy time with your family more.

Try to keep the positive attitude that is in you. It will help.

Lorraine
[i][b]

Expect the worst in life you won't be disapointed and you'll be prepared!
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Re: First time writing.

Postby pwinstanley » Sun Oct 27, 2013 9:31 am

Thank you so much, really appreciate that. Peter

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Re: First time writing.

Postby painprincess1 » Sun Oct 27, 2013 10:15 am

Hi peter , id have to say the only help i have ever had is from my dr and here. i cant see the point going to pain management myself.as ppl telling to to bend and move about walk and try head pack , but thats just me if it helps other ppl great.i have to say for me Tramadol and paracetamol is what i take . i no unless i took a bucket load i wont be out of pain.but it helps . il contradict myself here. i do no for me moving is the best thing to do. but then i dont need a team of ppl to tell me that.giggles .
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Re: First time writing.

Postby pwinstanley » Sun Oct 27, 2013 11:02 am

Lol. Thanks.

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Re: First time writing.

Postby juejue » Sun Oct 27, 2013 1:56 pm

Hi Peter,

Sorry to hear you're suffering, I am on pregabalin and amitryptaline which works well so it might be worth asking about that but it does make you drowsy at first.

Definitely keep pushing for the pain management clinic, they made a massive difference to me, they can refer you to physio from there, ones who are specialist in chronic pain management, who can help you with gentle stretches and pacing techniques which make a big difference over time - although I was initially against the stretching, I thought it would make me feel worse but it does have a positive impact.

They can also refer you for cbt which helps with the depression and how you now think of yourself, they also help with relaxation techniques which help you stop tensing up which makes fibro worse.

If they have them in your area the pain management clinic can refer you to a pain management course which helps with all these things and more.

Good luck and don't take no for an answer
Julia x
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Re: First time writing.

Postby pwinstanley » Sun Oct 27, 2013 9:26 pm

Thank you Julia. I'll get in touch with my dr about referring me and won't take no for an answer! Thanks. Really appreciated. Thank you 'painprincess1' too. I'm on Prozac and don't know if you can take amitryptaline at the same time. Also, and I don't know if this sounds stupid; when I want to chat or discuss things on this forum - do I have to create another stream or carry on on this one (don't want to lose you guys if I have to create a different one!). Cheers. Peter

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