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The UKFibromyalgia Forums • View topic - Hello and Questions.



Hello and Questions.

Introduce yourself and find fellow sufferers in your area or who share the same interests.

Moderators: perseus, *Lisa*, FluppyPuffy

Hello and Questions.

Postby Coffee Demon » Wed Aug 22, 2012 1:43 pm

Hey, just saying hi.

My wife got diagnosed in 2007 with fibromyalgia. Since then, shes been given Pregabalin, Nortryptylene, Co-Dydramol (please excuse spelling mistakes). She also takes a thyroid tablet (I think its Levothyroxin) and Lisinopril for her blood pressure.

since then she's getting repeats and she goes for a blood pressure test occasionally. Apart from that, nothing is going on medically (usual run-around with doctors).

She just wants some advice as a few new symptoms have appeared. She wants to know if this is 'normal' (I use this term very loosly as nothing seems normal since she was diagnosed) or if she has to start looking for something else that she might have on top of all this.

Recently she has had 'bolt through the head' pains. A shooting pain like a metal rod stabbed through the eye to the back of the head.

She's also got a face pain. She describes it like someone is pushing a blunt object down through the top of her head and into the back of her eyes down past her nose and into her teeth.

She's also got horrific mood swings. I never know who I'm going to wake up to in the morning.

She's had a look on the FM forums for this and she hasn't seen it mentioned anywhere. She basically wants to know if this is OK for FM or if she might have to look for something else.

Her memory is getting worse she can watch the same show over again and not realise she has already seen it. People bump into her and say hi, she does not remember them, even when they start to give details of how they met her. She has started putting freezer foods in the cupboard and not the freezer. Her father has Alzheimer's so we are now thinking could it be that?

Do you have support groups or similar so we could go and find out this is normal? Any help would be appreciated.

Thanks very much.
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Re: Hello and Questions.

Postby denys » Wed Aug 22, 2012 1:48 pm

Hi and :welcome: to the forum :wave: firstly it is very dangerous to put any new symptoms down to FM without getting them checked out, it is quite possible its FM related but you really must get your wife to make an appointment with her GP, go with her and prompt her if she is forgetting things to make sure she gives them all the information they need. It may be useful to make a list to take with you

:fingerscrossed: and get your wife to join us too :-D :-D :-D :-D
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Re: Hello and Questions.

Postby shazq » Wed Aug 22, 2012 8:04 pm

:welcome: to the forum.

Its always best to get new symptoms checked out by your Gp just be on the safe side so the pains in your wifes head really need looking at.
As your wife has Alzheimer's in her family and is forgetting friends than this should be mentioned to her gp as well just so you can find out whether its the that or fibro because fibros do have memory problems as well known as fibro fog.

We have lots of info on the forum so have a look around, we have a section on support groups so have a look up to see if there is one in your area, if you go to the top in support groups there is a list of groups in different areas.

If you need any help or any questions just ask we are a friendly bunch on here :wave:
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Re: Hello and Questions.

Postby Coffee Demon » Thu Aug 23, 2012 11:36 am

Cheers for replying.

We've not had good experiences with Doctors. We are trying to get this sorted ourselves.

Shes been to a rheumotologist. He said that she didn't have Lupus and that she was just fat. She's been to a neurologist who prescribed acupuncture. One of the GP's in our surgery is OK, but doesn't know where to go next. The other one sent her for a psychiatric evaluation. That was amusing. The Psychiatrist spent the whole time asking us about my Wife's physical symptoms and why our Doctor wasn't treating them. The psychiatrist wrote that GP a letter and he won't see us anymore.

My Wife told the other Doctor (the one who listens) that she was worried about her memory and that her Dad had Alzheimers. I wasn't there at this, but she tells me that they weren't going to test for the disease as her Dad had it and her Mum didn't that it was thus "Diluted" (Sic) and her Dad had it late onset.

I've just read this back and even I can't believe it, so that's why we don't bother with Doctors anymore. We've both come to the conclusion that the NHS is great at treating physical trauma, but if it isn't something obvious like your leg falling off, then you are screwed.

We spent some time in the States and at least they tried there. She had an Evoked Potential Test, which she 'failed' by one point. She had MRI's and such and they couldn't find any brain lesions. There was a lot of damage to the top of her spine that the doctor's said was due to a car accident - even though she wasn't in a car accident- they kind of ignored that bit. She had a spinal tap but it was full of blood so they couldn't get a result. Over here it's just been a bit of a joke really.

There is only so much that we can do. We can document symptoms and cross-reference those with lists of different diseases, but at the end of the day I can't do lab tests or prescribe medicine, so we do what we can. I've even thought of going private. I'm trying to get something sorted out with this and she's pretty much given up on the whole thing. She's too run down and fed up to even let me book an appointment any more.

She's probably not going to be posting a lot as concentrating on a computer screen tends to set her migranes off. We've been talking about it and I can adjust the colour scheme on her computer or her monitor so that it should be better for her. As a result of the pain and the bad experiences with medical types, she's a bit reclusive as well.

Thanks again for the replies.
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Re: Hello and Questions.

Postby shazq » Thu Aug 23, 2012 4:41 pm

Hi Coffee demon

Not surprised you are both frustrated.
Are there any other doctors at your surgery who you could go see? if not i would consider moving to another practice.

Your wife might need her meds changed or at least reviewed if she feel these are not helping with her pain plus you mentioned her mood changes so her nortriptyline might need to be increased or changing? This all needs to be discussed with a doctor, so having a good understanding doc can make a big difference.

Headaches can be a symptom of fibro but can also be a side affect from her meds so has she just changed meds recently?

I used to suffer with really bad migraines my gp tried me on many different meds, they do prevention meds which might help your wife so thats another thing worth asking a doctor about, i was sent to a neuro and he has give me meds for mine as nothing else worked for me.

Once your wife finds the right med, or combo of meds you might find she will start to cope better and her moods will start to change, there are a lot of meds to try you just have to get that understanding gp willing to help you go through them.

A lot of meds can take up to 4 weeks to kick in and we do tend to get the side affects first but its worth sticking it out if you can.
Here is a link of some meds used for fibro which might help.-
http://www.nhs.uk/Conditions/Fibromyalg ... tment.aspx

To help your wife to read the screen you can enlarge the writing size i had to do that as well. i also have to limit my time as my eyes start to go blurry.
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Re: Hello and Questions.

Postby denys » Thu Aug 23, 2012 5:16 pm

Definitely change doctors surgery I think you have been very unlucky with the medical professionals you have come into contact with so far
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Re: Hello and Questions.

Postby Coffee Demon » Fri Aug 24, 2012 11:42 am

Thanks for your advice. I'll try to see if she will go to another doctor, but she's said she's fed up with it all at this point.

One other thing, do any of your symptoms run on a cycle? Like you get a particular symptom, fogginess for example, then it eases off, then you get it again in a few months time, but it's slightly worse?
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Re: Hello and Questions.

Postby shazq » Fri Aug 24, 2012 5:14 pm

Hi
They sound like flares coffee demon, some sufferers will find their symptoms will ease for short periods then come back again stronger and this goes in circles.

I can understand your wife being fed up with it all :hugs: hopefully she will be able to get on the forum because we have a good support network on here & lots of info. Did you look into seeing if there was a support group in your area?

Has your wife tried a Tens machine for her pain? wheat bags help as well & hot water bottles.
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Re: Hello and Questions.

Postby Coffee Demon » Sat Aug 25, 2012 1:30 am

Hello, I am Nikki, coffee demons wife. He asked me to say hi.

Thanks for looking after him and answering his questions. We have found a support group in Derby, they have meetings in September perhaps I might go to one.

Have a blessed one.

Nikki.
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Re: Hello and Questions.

Postby shazq » Sat Aug 25, 2012 3:59 pm

:welcome: Nikki

So glad you have found a support group.

We are always happy to help and support you on here as well, good to see you on here :wave:
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Re: Hello and Questions.

Postby isitme » Sun Aug 26, 2012 9:54 am

nikki,

hi and great to meet you.

you have already been helpful to me,

first you reminded me to look into supports groups and 2nd i live in derby - so thanks for that.

will try and remember to look details up and when it is.

take care you both.

:-)
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Re: Hello and Questions.

Postby Coffee Demon » Sun Aug 26, 2012 5:28 pm

Glad I could help someone.

Here is a link to the site I found for Derby.

http://www.derbyfibro.co.uk/index.htm

Have a good one,

Nikki.
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