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The UKFibromyalgia Forums • View topic - HELP-newly diagnosed



HELP-newly diagnosed

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HELP-newly diagnosed

Postby catrina » Fri May 30, 2014 7:02 pm

Can anyone help please, after 4yrs of hospital appointments to rule out any other illness I had to go private in January this yr, cost me £200 to be told within 10mins it was fibro I have, ( I asked many dr's to test me for this for well over a year) lack of communication between my dr's not referring me to pain clinic, I had to wait another 3months for pain clinic app, I got that on 24th april, thinking it was going to be about medication, I was wrong, it was an hours app with phycologist who told me it would be another 5/6 weeks waiting list to see the nurse about medication, I foned hospital today as time was well up only to be told iv not been referred, , im seriously cracking up, cant work in my own business anymore as im a "liability" , Im a barber and it was getting dangerous, I asked the phycologist if my own dr cant prescribe meds, but no, it has to be the pain nurse, seriously is this true, why on earth cant my dr not help with this? My tunnel is getting darker with no light in sight.
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Re: HELP-newly diagnosed

Postby Sue Davies » Fri May 30, 2014 8:05 pm

My doctor did prescribe me amitripyline but to be honest I wouldn't recommend, it makes you very zombie like.
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Re: HELP-newly diagnosed

Postby humphreys » Fri May 30, 2014 8:15 pm

Hi Catrina, I really feel for you, in my opinion, not enough doctors know about Fibromyalgia, my Rhumatologist took 2yrs to tell me I had Fibro, I was just taking Paracetamols, I got very very mad with them, and they seemed to have got on with the meds. I take Citalopram for depression, it does help, but I'm also on other meds for my Arthritis, I also have Pregabalin for my nerve pain, but the most anoying thing is the last three appointments I've had with my Rhumatologist have been cancelled, what the hells going on there. When I do eventually get to see him, I'll give him what for. You have to be forceful with these doctors or they'll just treat you as a number.

If I didn't have these meds I wouldn't be able to move, I hate taking tablets, but it's the only way I'm afraid.

You be strong and demand answers or they just move on to the next patient.
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Re: HELP-newly diagnosed

Postby FluppyPuffy » Fri May 30, 2014 8:18 pm

:welcome: to our FibroFamily Catrina :cow-wave: :cow-wave:

How did your pain clinic referral come about?? Was it as a result of seeing the doc who gave you your FM dx, or has it come from your GP??
Apologies for the questions, it's just that things seem somewhat jumbled, which I can understand with how things have been for you. For someone to try and come up with some advice for you, a few more details might be needed.

Have you tried to find out if what you were told about meds only being prescribed by this specialist nurse is how things are normally done??? Speaking to your GP might be able to clarify this. Also, your GP may be able to prescribe you something in the interim whilst you try to get this pain clinic situation sorted out. Having a talk with a pharmacist could also be helpful. There are a number of stronger medications available otc, and a pharmacist could be able to tell you if they might be suitable for you. If you have no joy with your GP, you may need to consider looking for a more supportive one, possible at another surgery.

There are also a number of self~help things that you could try. For a good number of us, applying warmth to a particularly affected area can help bring some easing. This could be a hottie~bottie wrapped up in a towel, or a wheaty bag heated up in the mikey. There are also heat patches that are designed to steadily release heat over a number of hours. Soaking in a hot bath can also bring about some easing. A TENs machine can also be helpful in easing things, and is something that is used by quite a few of us on here.

I appreciate that some of these suggestions may not be ideal for you. With what you have posted so far tho, these are all that have come to mind so far.


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Re: HELP-newly diagnosed

Postby denys » Fri May 30, 2014 9:52 pm

Hi Catrina and :welcome: to the forum :cow-wave: :cow-wave: I wont add any further advice or suggestions as everything seems to have been said, I hope you med situation is sorted out soon :-D :-D
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Re: HELP-newly diagnosed

Postby Beth1012 » Fri May 30, 2014 10:36 pm

Oh Sweetheart.....You're not alone.

So many horror stories of diagnosis / treatment I guess you may be feeling overwhelmed. :shock:

Medication is a difficult one, what works for one person may have horrendous side effects for another. There is no easy way through it other than trial and error. :crazy:

I feel very blessed that I have a wonderful pain management consultant.

Try talking to your GP, Rheumatologist, Pain Management Specialist about:
Amitriptyline
Pregabalin
Duloxetine ( my current wonder drug!)
Clonazepam

Be as strong as you can be, praise yourself for every achievement, no matter how small, and know you're not on your own

Love & Hugs x x

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Re: HELP-newly diagnosed

Postby catrina » Sat May 31, 2014 8:06 am

Hi folks, thanks so much for your replies.
The only medication I am on is amitryptyline 30mg a day, this was to help me sleep as I was up during the night most nights and just could not sleep, I spoke to dr to up them from 20mg as my depression was getting worse, back in sept I was sent to a neurologist to see about the nerve damage in my face which I beleive is neuralgia,iv had shingles 8 or 9 times now and 4 of those times I had it on my face, the neurologist treated me like I was an alien from space, I walked out and called this professor an ass,he was soooo rude it was just unbelievable, then he writes to my dr and says to try pregablin or gabapentin with no reason as to why I was to go on them(b4 diagnosis), I said to dr let me think about it as iv been reading on many fibro forums about how these affect people, my dr was ok with that and understood my fears about taking these just to get weaned off them at some point and the side effects worry me. once diagnosed in jan the rheumatologist wrote to my dr to send me to a pain clinic, which eventually happened on 24th april, inbetween jan and april I was in drs crying as it was all taking so long and I asked if she could just prescribe medication and she said ur better waiting to see pain clinic as they specifically deal with this illness, and now they have gone and forgotten about me.
I understand that we are all different and its trial and error with medication, even tho im not into taking tablets I need to try something, anything, to try get a bit of life, I also asked my dr about low dose naltrezone LDN, has anyone tried this? And again I was told 'wait and see pain clinic", I foned the pharmacy in glasgow about this as I understand not all drs will prescribe this (no money to be made) & he said on fone a certain private gp would give me this, so I just dont know wat to do, another half a year has gone by and im still no further forward. My main problems are the chronic fatigue and chronic pain (and the depression for not having a life anymore) iv got app nxt thurs to see my gp about all this. Hope this answers ur question and thanks very much to all of u x
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Postby Monty99 » Sat May 31, 2014 9:46 am

I really feel for you. The best patient is the most informed one! Try to read all you can. You have to make life changes, anything from resting in the afternoon, changing your working hours, no drinking, going to bed at the same time every night and not too late. Try to start the day off with a warm shower, this will help you. The pain clinic will defo help you but your doctor could prescribe some meds in the meantime. All the med will initially make you feel like a zombie it is true, however as time goes by and if they are taken regularly it will certainly help. Yu also need to see a psychologist. there is no way you can deal with this diagnosis without getting some help. They are a real support and believe me you will, in time, begin to manage your pain. Keep a pain dairy because the pain management clinic will find this helpful. Put in times of getting up and going to bed, daily activities and your pain throughout the day. Do not despair. I remember three years ago Occupational Health at work advised me that in three years from now my life will be different and the pain less and I remember laughing at them, or crying!! But it is true, when you know what your triggers are, giving in to the pain, making some life changes then you are more in control. Good luck!
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Re: HELP-newly diagnosed

Postby addz1781 » Mon Jun 02, 2014 8:07 pm

Hi all, just wondered if anyone could help me please? I have just been diagnosed with Fibro and CFS. I am currently taking Pregabalin. This has taken a long 12 years to diagnose. I was speaking to a friend and they explained that you could claim come sort of Incapacity benefit?? Thing is, several people have said not to bother as no one with this condition is successful. Should I bother claiming or not??? Thanks in advance xxx
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Re: HELP-newly diagnosed

Postby Theresa34 » Mon Jun 02, 2014 8:12 pm

I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: HELP-newly diagnosed

Postby Theresa34 » Mon Jun 02, 2014 8:14 pm

Catrina it sounds like you've had a heck of a time getting your diagnosis and getting help. I think I got extremely lucky! I was diagnosed very quickly and treated very quickly. The only med that really helps me is the Amitriptyline. It helps me sleep after years of insomnia, it also helps take away most of my pain. I am able to be much more active now its in my system but it took a few months x
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: HELP-newly diagnosed

Postby denys » Tue Jun 03, 2014 10:19 pm

:welcome: to the forum Addz your question would be better asked on the benefits and work board, some members do get benefits and they arent awarded on what the condition you have is. You need to talk to a benefits advisor who can assess your current situation and tell you whether or not you may qualify as there are a lot of criteria to meet
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Re: HELP-newly diagnosed

Postby Beth1012 » Wed Jun 11, 2014 11:19 am


"Most Days I'm Only As Strong As The Coffee I Drink and The Hairspray I Use!!?" :)
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