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The UKFibromyalgia Forums • View topic - Hi, I'm new here but have a few questions :)



Hi, I'm new here but have a few questions :)

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Hi, I'm new here but have a few questions :)

Postby NicS » Thu Feb 27, 2014 10:09 pm

If I'm honest I don't know where to start! But I went to my Doctor and told them I'm fed up with being in pain. So here goes....

I've had daily headaches for 10 yrs. Some days they are tolerable and then others they are intolerable. Closer to my periods the worse they are. On the intolerable days I cannot function at work. The sooner 5pm comes the better. When I'm home the confusion, brain dead, confused feeling lifts slightly. Paracetamols, ibuprofen and co-codamols do not work.

I wake up in pain everyday. The areas it start in are the middle of the back of my head, then within an hour or two they go down the neck, through the muscle of my shoulders and across above my blades in a triangle shape. By 3pm I feel like I've been hit on the back of my head and neck with a shovel.

I wake with pain in my hips. Back ache in the lower part and then if you can imagine the area from hip to hip down all the way to my top of my bottom line. Throughout the day I can gain sciatica down my left leg. I have days where I just cannot sit down without having to lift myself out of the chair by putting my weight onto my elbows on the table or lifting myself out of my chair with an arm. My job is sitting down all day with frequent walks to the printer every 40mins. I have had desk risk assessments and equipment put in place to decrease the pain. Special chair for me, writing desk to lift the items I'm writing on so I don't have to stretch my neck, spine looking down. I have some days where my fingers tingle.

I get to 3pm in the afternoon and I cannot cope mentally with the physical pain. I'm finding myself just either wanting to swear loudly or just cry. :oops: My memory has suffered badly. I cannot remember what I've done through the day. I'm confused, drained and emotional.

My thought process is intense. I cannot let go of things. Stupid things are all of a sudden mountains.

I am constantly tired but can't sleep. And when I do I always wake through the night. Taking an hour at least to fall asleep again.

I've had physiotherapy sessions so do exercises throughout the day that I've been given. I've had blood tests and everything came back normal. I've been referred to musculoskeletal appts who could find no neurological issues, just tension in muscles. They referred me to Pain Management and advised CBT. I've spoken to my Doctor again who has no answers. Speaking to the Pain Management consultant he states that my symptoms are consistent with Fibromyalgia but states there is no test to confirm. He has prescribed me Nortriptyline. I've tried Amitriptaline but I really do not like the effects.

I just thought I was stressed. The last 3 years have been very difficult. I'm the main earner and main parent to my now teenage daughter.

How do I know if I have Fibromyalgia? And what do I do from here? I'm a bit lost. Thank you in advance. I feel I've forgotten something so I'm sure I will be adding to this. Lol
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Re: Hi, I'm new here but have a few questions :)

Postby raj007 » Thu Feb 27, 2014 10:44 pm

Hi Nics
Welcome. I am new here too. Your symptoms sound exactly like mine. I got a referral to a specialist neurologist who gave me botox in the head and neck. They seemed to help for about 2 weeks, but after that all my symptoms returned. I am having a further treatment in a couple of weeks. Maybe its something you could look into. They might be more effective for you.
Take care
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Re: Hi, I'm new here but have a few questions :)

Postby NicS » Thu Feb 27, 2014 10:52 pm

During my last appt with my Docotr they apologised because they don't know how they can help.

So this is leaving me very confused as to what I have got, and how do I get tested. I would like to walk into work and home and say this is what is wrong with me can we do something to help me be pain free.

Why Botox? :?:
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Re: Hi, I'm new here but have a few questions :)

Postby NicS » Thu Feb 27, 2014 10:57 pm

Just remembered I have had an MRI scan in my neck area which didn't show any concerns almost a year ago now.

I look back and remember I've always had a few niggles. The headaches were the start. Then of course neck and back pain but I seriously just thought I was getting old. I'm only 42!
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Re: Hi, I'm new here but have a few questions :)

Postby raj007 » Thu Feb 27, 2014 11:03 pm

I got my diagnosis from a rheumatologist. Botox temporarily damages the nerves and hence stops the pain. In theory the longer you are pain free the body retrains itself so that eventually you dont need the botox to be pain free. Thats how my dr explained it to me.
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Re: Hi, I'm new here but have a few questions :)

Postby FluppyPuffy » Fri Feb 28, 2014 2:47 pm

:welcome: to our little sanctuary Nic :cow-wave: :cow-wave: :cow-wave:

Sorry to hear how things are for you currently, it is so frustrating when you are experiencing so many symptoms and problems yet can't get answers as to what may be causing it :too-upset: :too-upset: :too-upset:

FM doesn't show up in any of the currently used tests at the moment, to arrive at a dx of FM, it tends to involve other possibilities that share very similar symptoms being investigated/tested for, and when all other options have been discounted, that is when an FM dx tends to be arrived at.

If you feel that FM may be behind your symptoms and problems, then you initially need to approach your GP about the idea. If you print up some info about FM from a reliable source, such as or and use it to help you compile some info explaining why you feel FM could be the reason for your various symptoms and things, then go and see what they think to the idea. Hopefully they will be open to the idea, which will then start things moving towards you finally getting some answers :fingerscrossed: :fingerscrossed: :fingerscrossed:

In the meantime, have a bit of a looky around the place. With what is across the boards, you may come across some new new ideas and suggestions to try out that helps make things a little more manageable for you :fingerscrossed: :fingerscrossed: :fingerscrossed:


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Re: Hi, I'm new here but have a few questions :)

Postby NicS » Fri Feb 28, 2014 8:10 pm

Thank you both :-D
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Re: Hi, I'm new here but have a few questions :)

Postby Itsnotinmyhead » Fri Feb 28, 2014 11:13 pm

Welcome NicS

I don't think it matters whether you are forty two, twenty two or sixty two, living in constant pain and feeling wretched is not how we are supposed to feel. But sadly many of us do.

I have started half a dozen posts today and deleted them because to be honest I just want to cry, and I don't have the energy to do that.
Then I came across your post and thought, she is saying pretty much everything I want to say, but so much better than I can manage today.

My neurosurgeon has referred me to a rheumatologist (end of March) because he thinks I might have Fibromyalgia. I have no idea what will happen at the rheumatologist appointment, but I have written down what has been happening to me over the last few years (and before) and a brief family history to take with me. Hopefully that will help me because my mind normally goes completely blank when I see a doctor and I forget everything I wanted to tell them. So frustrating :pull-hair:

I would go back to the Pain Management consultant and ask him why, as your symptoms are consistent with Fibromyalgia (despite there not being any tests available to confirm it as it is an illness diagnosed by cancelling out other illnesses), he will not give you a Fibromyalgia diagnosis. Perhaps he might understand how important it is to you to get a diagnosis if you explained that it is easier to manage and fight something with a name, and that is what you want to do.

Being honest I say I would, but in truth, that is what I hope I will do if that happens to me. I'll let you know.
I know from experience it is easier to manage a known rather than an unknown, if that makes any sense. For me, fear consumes the unknown, making everything so much harder to cope with. As soon as I know what I am dealing with, I am more able to be in control of it instead of it being in control of me.

Don't disappear now you are here.

We have an army of supporters here to help us. :grouphug:
“I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
― Maya Angelou
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Re: Hi, I'm new here but have a few questions :)

Postby lessa » Sat Mar 01, 2014 2:37 am

Ask to be referred to a rheumatologist for a diagnosis. My rheumy then prescribed tramadol as she says (for some people) that helps with fibro pain, and I'm one of the lucky ones that it helps. I take it along with paracetamol 3-4 times a day. Have you had your vit d checked? It's common to have a deficiency and vit d tablets help.some people a lot. Try the norwhatsit(amitriptyline replacement) as I've spoken to people that got on with it whereas they hadn't with amis, unfortunately my Dr doesn't want to.prescribe it.for me.

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Re: Hi, I'm new here but have a few questions :)

Postby denys » Sun Mar 02, 2014 12:34 am

Hi and :welcome: to the forum :cow-wave: :cow-wave: I hope you get some answers soon :-D
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Re: Hi, I'm new here but have a few questions :)

Postby NicS » Sun Mar 02, 2014 1:07 pm

Another thing that gets to me is my thought process. I'm in a relationship that has been based on lies for a very long time. I work in a place that is full of people lying just to get what they want. So my life is all about working and seeing through the lies. Which in turn has made me controlling, angry and also confused. Because I can't see grey areas. To me everything is black or white.

As a result I've got forms to self refer myself to CBT.
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Re: Hi, I'm new here but have a few questions :)

Postby NicS » Fri Mar 28, 2014 9:48 am

I've been on Nortryptaline for a month. It didn't stop the pain so they've now put me on Gabapentin. I've had 3 nights of sleeping tablets. Can't have any more sleeping tablets. Last night no sleeping tablets.

Woke up this morning like someone has taken a hammer to my body. :(
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Re: Hi, I'm new here but have a few questions :)

Postby fibro-lu » Fri Mar 28, 2014 10:22 am

welcome NicS
:hugs:
hope you will find answers
all the best :cow-wave: Lu
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Re: Hi, I'm new here but have a few questions :)

Postby FluppyPuffy » Fri Mar 28, 2014 2:49 pm

Nortriptyline needs about a month to take effect Nic, plus sometimes the dosage that you start off on isn't the right one for you, so needs a bit of twiddling and tweaking, plus a bit more time to help you find the right level for you. Maybe some more time and a change in the amount you were taking could have started making a difference to things.

When starting a new med, it's not unusual to find that things feel worse at first. But as the levels build up in your system, things should start to improve and make you feel slightly more huu~mon.


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