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The UKFibromyalgia Forums • View topic - hi from N.Yorks, new to forum



hi from N.Yorks, new to forum

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

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hi from N.Yorks, new to forum

Postby PoppyFlux » Wed Jul 27, 2011 1:13 pm

Hi, I'm a 37 yo mum of a teenager who's been coping with severe tiredness, pain and depression for most of my son's life. I was diagnosed with hypothyroidism just after my son was born & over the years my thyroxine has been steadily increased as this condition has never stabilised.
I also suffer from other conditions, IBS, cluster headaches that last for days, cystitis, disturbed sleep (I can sleep daily from 3 hrs to 20, depending on how I'm feeling & the medication I'm taking), severe depression and anxiety, & food and drug intolerances, as well as chronic asthma.
Unfortunately my relationship with my ex-husband broke down a couple of years ago as he was unable to deal with my extreme tiredness & pain, & believed it was all 'in my head' & I should just get over it. I had a lot of time off work due to illness & this caused a lot of arguments between us.
I'm now with a wonderful guy who's incredibly supportive, kind, caring and loving, and it was at his prompting (he's a trainee nurse) that I approach my GP as he suspected I have FM.
I changed GP's & after discussing my symptoms a couple of months ago with my new GP (I took my boyfriend with me for support) he also suspects I have FM, after yrs of being told my severe tiredness & generalised body pain & sensitivity was linked to my underactive thyroid condition.

I'm unsure how to get a proper diagnosis as whilst my GP is being very supportive & has given me pain meds, Amitryptiline, Tramadol, Diclofenac & Paracetamol (I'm intolerant to Codeine & think I'm developing an intolerance to Tramadol too), he hasn't given me a proper diagnosis & has told me I need to use these types of pain meds for a while before he can consider alternatives.

After reading through some of the posts in here I'm considering asking to be referred to a reumatologist or pain clinic, and to ask for anti-seizure meds to help with the muscle spasms & nerve pain.

I'm mostly on my own dealing with this as my son now lives with my ex as I haven't been well enough to care for him, I have a better relationship with my ex now & he's more supportive, but the rest of my family have their own worries and concerns to deal with so I don't burden them with mine, & my boyfriend lives in the US so we can only visit each other occasionally, although he recently proposed & we're planning to marry & live in the US next year.. but that brings it's own problems, like having to attend a medical assessment for an immigration visa & access to appropriate healthcare etc.

Anyway I wrote far more than I intended, but it sure feels good to get this all off my chest. I'm looking forward to getting to know others with this condition & learning how to self-manage my symptoms in the future (if this is possible), & if anyone can suggest what I should do to receive an accurate diagnosis I would greatly appreciate it.

thanks
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Re: hi from N.Yorks, new to forum

Postby denys » Wed Jul 27, 2011 2:05 pm

Hi Poppy, :welcome: to the forum, so glad you now have a supportive partner as its important to have someone believe how you are feeling.

You've really answered your own question about diagnosis ask for a referral to a rhuemy, your GP may be confident enough to make a diagnosis himself but be waiting to see how you react to the meds and whether your symptoms continue. Ask for a complete blood test and then I'm afraid it can be a waiting game until everything else has been checked and discounted :goodluck1: :goodluck1: and :fingerscrossed: :fingerscrossed: for everything :hugs: :hugs: :hugs: :hugs: :flowers: :flowers:
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Re: hi from N.Yorks, new to forum

Postby FluppyPuffy » Wed Jul 27, 2011 4:02 pm

:wave: Poppy :welcome: to the forum :chicken-dance:

There isn't much more that I can add to what denys has already said about finding out the cause of your pain and things.

:goodluck2: with getting a dx :fingerscrossed: :fingerscrossed:


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Re: hi from N.Yorks, new to forum

Postby motherelephant » Wed Jul 27, 2011 4:39 pm

Hello poppy and welcome to the forum .I also am Hypothyroid and have had fibro for 42 years since i was 12 . With experience i have learnt that you will still suffer with Hypo symptoms until your thyroid levels are stabalised .Many people who are Hypo have |fibro as well ,the symptoms can overlap .Until they stabilise your thyroid you will not know whether its Fibro or hypo causing the symptoms. When you go to the Rhumi make sure he knows that you have Hypo and that you are not stabilised .There are some threads on here about Hypothyroid which you may find useful ,especially the ones which talk about the things that can stop the thyroxine being absorbed properly . Many Gps have so little Knowledge on treating both Hypo and Fibro .My Gp never told me that I should not eat or drink for at least half an hour after taking my Thyroxine ,i only found out by chance .
You have been through the mill over the past few years ,i truly hope they can get you sorted .This is a great Forum with lots of lovely people . If you want to chat you can always PM me . Look forward to reading your posts .Big Cottonwool Hug motherelle .x :welcome:
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Re: hi from N.Yorks, new to forum

Postby PoppyFlux » Thu Jul 28, 2011 6:17 am

Thank you so much for all your informative replies & for your support and kind welcomes.

I forgot to mention that my GP has done full bloodwork & he found i had low iron, & although my thyroid was a little low he said it's a lot better than it has been in previous tests. When I told him that my old GP had said my symptoms were all thyroid related he was horrified, he saw me at my worst, in so much pain & barely able to walk or sit, not being able to bear being touched etc.
It's been almost 3 months since he told me he suspected I had FM, & from reading some of the info here maybe he's waiting as suggested, to see if my symptoms continue before diagnosing or referring me, but I'll book another appointment and talk to him more about it.

Would be great if I could get some relief from this, I seem to have more bad days than good right now *sighs*
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Re: hi from N.Yorks, new to forum

Postby FluppyPuffy » Thu Jul 28, 2011 8:33 am

Hopefully, when you get a definite dx Poppy, you'll be started on a treatment plan that will bring you some relief :fingerscrossed: :fingerscrossed:


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Re: hi from N.Yorks, new to forum

Postby PoppyFlux » Thu Jul 28, 2011 9:33 am

I hope so, made an appt with GP earlier this morning & going in at 11.10am, I've wrote a list, though it hurt like hell to write it's better than forgetting things. I've also wrote down the 'Medication' URL for this site as I was asking him about alternatives & he asked me if I had any drug names he could look at, so fingers crossed he'll try me on some diff pain meds as I seem to be sensitive to opiates & Paracetamol is.. well.. useless lol.
I just found out tho that my GP's wife is expecting a baby any day so I need to ask him to recommend another GP at the surgery if I need help & he's not available.. some of them are not very helpful at all.
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Re: hi from N.Yorks, new to forum

Postby FluppyPuffy » Thu Jul 28, 2011 11:40 am

The list is a most useful thing and a lot of us make them so that we don't forget things, just like you've done :mrgreen: :mrgreen: Hope you can find some suitable meds as well as a suitable Plan B dr, just in case you need one :fingerscrossed: :fingerscrossed:


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Re: hi from N.Yorks, new to forum

Postby PoppyFlux » Thu Jul 28, 2011 12:58 pm

GP appt went really well, I was the last patient so he spent a lot of time with me which helped as I hate feeling rushed (I'm sure we've all been through that).
He agreed that I'm sensitive to opiates & told me to stop taking Tramadol, has upped my Amitriptyline, given me a high dose aspirin & an urgent referral to the pain clinic - he saw how much pain I'm in today, can hardly walk, can't open doors etc, & he was concerned cos I haven't been able to cook, my hands and wrists hurt too much, & can't stand for long, so I haven't been eating.
He also mentioned Gabapentin but thinks I should stay on Amitriptyline for now as he's also treating my depression with it.
Ohh, he wrote everything down for me too cos I got the meds doses wrong last week (oops) but he was very sympathetic & said it's common with this condition. He was talking like he already knew it's FM, & told me he has a lot of experience with it... & suggested a couple of other GP's with FM experience whilst he's on parental leave.
& he repeated bloods as he wanted to see if there were any changes from last time & to have them done whilst having a 'flare up'.

Also got to talk to him about his new baby, his wife's due in a couple days n he's really excited, first time dad.. told him he's gonna love it, but be prepared for the sleepless nights, extreme tiredness etc.. omg was so tempted to say he'd know what sleep deprivation is really like for us, but managed not to hahaha

I feel so much better being able to talk about all this, it really helps.. Am still in a lot of pain but feeling better mentally, it's been a good day & it's only noon :D
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Re: hi from N.Yorks, new to forum

Postby FluppyPuffy » Thu Jul 28, 2011 1:19 pm

Your GP sounds a really good one, and you're fortunate to have some others in the surgery who know of FM as well.

It does sounds as if he thinks it is FM Poppy, maybe he just wants a conformation of what he things from a specialist before he starts treating you for it :dunno: :dunno: When your treatment starts after you've got a definite dx, it might be worth seeing if it's possible to take the 2 of them together.


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Re: hi from N.Yorks, new to forum

Postby denys » Thu Jul 28, 2011 1:24 pm

Sounds like a really positive appointment Poppy, being able to see things starting to come together really does help mentally and if thats brighter then you automatically feel a little more able to cope :fingerscrossed: :fingerscrossed: your appointments come through quickly :hugs: :hugs:
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Re: hi from N.Yorks, new to forum

Postby PoppyFlux » Thu Jul 28, 2011 1:33 pm

thanks, it really helps to be able to talk about this with people who understand, & to have a sympathetic & knowledgeable GP too, from what I've read here that seems like a rarity.
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Re: hi from N.Yorks, new to forum

Postby denys » Thu Jul 28, 2011 1:38 pm

Certainly is :( :( :dunno: :dunno: :dunno: :dunno:
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Re: hi from N.Yorks, new to forum

Postby shazq » Thu Jul 28, 2011 2:54 pm

:welcome: to the forum poppy :wave:
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