new diagnosis help !!!: Hi all I got... - Fibromyalgia Acti...

Fibromyalgia Action UK

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new diagnosis help !!!

sharne27 profile image
7 Replies

Hi all I got diaqgnosed with FM about 6 weeks ago. Ive suffered with pelvic pain for 4 and half years now , I got so bad i had an hysterectomy last year That was not needed now i struggle to walk my spine, neck arms and legs hurt Ive been on crutches for 3 weeks Ive always got back and pelvic pain. I slurr my words cant talk properly sometimes i feel like a child. I keep thinking my tongue is going to fall out, my mouth goes numb get pins and needles in my hands,,, people dont understand me and its getting worse fast. For two years ive been taking oxy norm, Tramadol, oxy contin and pethadin, not all together tho lol for 4 months ive been on morphine and oxy norm 8 times a day. My doc has now just stopped it all and the pain is worse than ever. Ive only been given Gabapentin and amitriptaline and i am waiting for a second appointment with pain management. Has anybody else had the same thing happen? I feel so lost have days where i cant even get out of bed due to the tiredness and pain, Its hard tho as I have a 2yr old son, Ive got to give up work, my partner is now home to look after me. My mum was diagnosed with FM about 18 months ago and was given Tramadol and amitriptaline.

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sharne27
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Mdaisy profile image
Mdaisy

Please feel free to look at the FibroAction website link below, for printable fact sheets providing information covering many aspects of Fibromyalgia including symptoms to medications

fibroaction.org/Pages/A...

Hope this helps

Emma

sharne27 profile image
sharne27 in reply toMdaisy

Thank you x

Ozzygirl64 profile image
Ozzygirl64

You have picked a good site to come to as we can all listen on here and help out where we can, they really are a great bunch on here. My hubby calls me his fibro-veteran, I have had it 26 years, diagnosed for 22 years. It would be good if you can check through the info Mdaisy has given. I am only on Amitriptyline, not on any pain meds due to other ongoing health problems that would be made worse by pain meds. I do hope you find solice in joining the site and find any info useful xxxxx

Hello Sharne, did your GP give you a reason why your "normal" meds were being changed? They haven't actually been stopped, they've been changed to different meds, Gabapentin and Amitriptyline. Also you are having pain management treatment, so I would imagine that's your GP's plan for you.

Gabapentin (Neurontin) - This kind of medication has been found to be useful in the treatment of neuropathic pain. As well as helping pain levels, some Fibro patients have found that it can help with sleep and some other symptoms

Amitriptyline - Amitriptyline is a type of medicine called a tricyclic antidepressant (TCA). This type of medicine acts on nerve cells in the brain. In the brain there are numerous different chemical compounds called neurotransmitters. These act as chemical messengers between the nerve cells. Amitriptyline works by preventing serotonin and noradrenaline from being reabsorbed back into the nerve cells in the brain. This helps prolong the mood lightening effect of any released noradrenaline and serotonin. In this way, Amitriptyline helps relieve depression. Amitriptyline can cause side effects such as drowsiness, so helps promote sleep.

Both these medications have shown benefits with Fibroymalgia as I am sure you will be able to see from the explanations of the meds above. They treat many of our symptoms.

Hopefully you will acclimatise shortly and feel better. I suppose we have to try to have faith in our GP's, they know about these meds after all. Have you tried talking to your GP about how this has made you feel, they need to know this in order to get the right combination of types of meds for you. Please speak to your GP if you haven't already.

I hope you feel better really soon, take care and please let us know how you get on .

(((hug))) xxxx

sharne27 profile image
sharne27 in reply to

I was told that the meds i was on would not help as they are opiates or summert like that. Since ive come off them i can feel more pain. just hope can get it sorted or at leaset some form of relief. Ive seen so many GPs and they have said different thnigs. But they guy at pain management has said there's a few meds that i can try so im just waiting now. xxx

sharne27 profile image
sharne27

Thank you all for your input Im finding it hard pain dont seem to be letting off, I cant do things with my son the slightest touch hurts but he is to young to understand. I take 1500mg of gabapentin at mo and 30mg of amitriptiline. But ive been told that there is a newer version of gabapentin that i can try plus other things. It helped for a little while but now back to square one Its so nice to no that there are people who understand because my manager is not very happy ive been off work 9 weeks. I find mornings and evenings the worse. xxx

Oh I understand about the opiate element. It may take a while for the Gabapentin to take full effect so stick with it for the mean time, don't stop taking it. It sounds like a bit of an experiment at the moment to see what med/s would work best for you, so hopefully before too long you will get as much pain relief etc as you did before on your morphine etc. This obviously wasn't suitable for you to take being an opiate.

Try not to worry too much about your manager, you can't help being poorly. You will have sick notes from your GP verifying your sickness and dates etc. That is all you need to provide as proof etc.

Mornings do tend to be pretty tough for many of us. I actually don't feel "right" sometimes until early afternoon and then by evening I am, firing on all cylinders, this isn't unusual with Fibromyalgia.

Take care Sharne, we are here for you and we do care about you. We will help and support you as much as we can.

(((hug))) xxx

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