Hello New to forum & Northamptonshire!

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

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Hello New to forum & Northamptonshire!

Postby piglet_mini » Tue Aug 03, 2010 9:51 pm

Hello, everyone, :wave: I have been reading lots of the site and hope to reply to you now I am active (typing takes ages due to pain but I will try as much as I can). I am 31 have 2 children ages 2 & 4. 10 months ago I moved to Northamptonshire (near Daventry) and would love to meet locals with FM.

I have had diagnosed FM for 6 years as well as a condition called Fowlers Syndrome (bladder prob which causes urine retention and I neeed to catheterise myself) 2 years ago I had to have my bladder removed and a urostomy formed due to FM causing to much pain to catheterise not just in the urethra but I couldnt do it myself for wrist, back & hip pain preventing me getting into the position! Sorry am I giving to much info too soon!!

I am feeling a little alone at the moment as all my family and friends are 130 miles away in Hampshire and typically I am having a real bad flare up to which hubby has had to take extra time off work (does flexitime and works from home alot), My Children go to child care 3 days a week and we have had to employ a cleaner/home help.

On the plus side the doctors at my GP surgery and at Northampton general hospital have been brilliant. I have yet to officially see the pain team (soonest appt is 5th Oct - 5mth wait!!) I did see them when I was an inpatient back in May and they have been great at adjusting my meds. Currently I wear a 75mg Fentanyl patch which makes life bearable and for breakthrough I have 100 microgram sublingual fentanyl tablets or oramorph (I prefer the fentanyl as I dont get any side effects). I have 2-5mg diazepam up to 4 times a day but mainly just at night, 200mg slow release tramadol when required, 25mg amitriptyline at night, 10mg domperidone 3 x day then various meds for the IBS type symptoms when required. I also pay to have accupuncture twice a month and have used the hydrotherapy pool on several occasions. I hope to get the pain team to "prescribe" both accu & hydro as they are helping lots but are expensive. I have yet to see a clinical psychologist to try CBT for pain and I am lucky my mood has been stable even at the worst times. Recently it has been in decline though.

I had been getting lower care rate DLA for 3 years but finally after appeal following renewal recieve DLA at the middle rate for care and lower rate for mobility. I feel very lucky as I know many people dont. My GP wrote an amazing letter for me as since December I have had multiple stays in hospital (in may it was for 26 days) and my consultants were happy to write too. I use this to pay for childcare and my homehelp. I find it so frustrating not being able to look after my own children fully on my own but they are so good and understanding when it comes to cuddles and physical contact.

Look forward to speaking to you all soon x x
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Re: Hello New to forum & Northamptonshire!

Postby denys » Tue Aug 03, 2010 9:56 pm

Hi Piglet and :welcome: to the forum, glad you have joined us and look forward to your posts :hugs: :hugs: :flowers:

As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
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Re: Hello New to forum & Northamptonshire!

Postby hamstergirl » Wed Aug 04, 2010 7:11 am

Hi piglet.

Welcome to the site.

This site has given me lots if useful advice but it's just so nice to be able to talk to someone who knows what it's like living with fm.

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Re: Hello New to forum & Northamptonshire!

Postby budda » Wed Aug 04, 2010 9:24 am

Hi Piglet :welcome: to the forum :flowers:
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