Where to begin....

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Where to begin....

Postby sara_elizabeth » Fri Dec 06, 2013 4:31 pm

I'm Sara, I'm 29 and I live in London. I was diagnosed with fibromyalgia at 16 but began showing symptoms from age 11, I cannot remember a time in my life where I wasn't in constant pain. I was born with extreme hypermobility (9/9) and apparently this fortunate gift I inherited from my grandma led to such a young onset. My whole life I've struggled with severe insomnia and never feeling rested. When I was in my teens I managed to get away with being on sleeping pills (ah, youthful energy!) but as I hit 18, 19 I started on various medications (Voltaren) but and coped okay with that and sleeping pills but as with everything......it wasn't enough (I sound like a junkie!).

Long story short I've been on almost everything, Pregabalin, Gabapentin, Naproxen, Amitriptyline....all to no avail. I used to have trigger point injections which helped for about an hour, I've had those vitamin cocktail injections and those used to help for days and then it got to a point where I was burning through the positive energy benefits in about twenty minutes.

Right now this is my meds regime:
Duloxetine 20mg (2x day)
Topiramate 300mg (2x day)
Pramipexole .75mg (.25AM, .5PM)

I was lucky? Unlucky? enough to be in a severe motorcycle accident that caused me permanent damage to my back and through that I was able to get a referral to a pain clinic and now I'm on opiate patches that have literally saved my life. Before I went on Buprenorphine patches I was nearly bedbound in pain and now I am ambulatory. But at the same time I can't really work...I was doing really well with Professor Davies, he was really kind to me and let me come in every few months on the uber cheapest rate for people on benefits and not do any injections and just call it a conversation because he knew how poor I was...I am...and let me go for a visit and just discuss my health and medications for £50.

Now that he has died the man who has taken over charges £250 for the initial visit and there are no discounts and no more educated fibromyalgia specialists with the training to discuss and maintain any medication regime. I found out he died this week when I had hoped to make another visit because I'm wholly reliant on my opiate patches to be mobile. Now I just feel lost and unprotected.

The only other person who understands is my mum because she lives back in the states (where I'm from) and even though the are many many years apart my disease has already progressed to the state of hers and she's been suffering for over 25 years with the pains of this disease (before it had a name).

I had amazing results when I lived in the states taking milnacipran but they just won't approve it here and I don't have US health insurance so I can't afford it...I wish I could (granted when I took it my fibromyalgia was maybe a 4 compared to the 12 it is now [out of 10]).

I've had doctors tell me I'm crazy, that I'm a drug addict and that I'm needy and attention-seeking. My last GP told me I trick doctors into giving me so much medication so I can stockpile it to commit suicide.





----
sorry to ramble so much...just figured I might as well put everything out there.
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Re: Where to begin....

Postby whoami » Fri Dec 06, 2013 10:59 pm

Sara...what patches are you wearing and what dose?

Is a Dr prescribing them for you in the UK? I ask because you can't just stop using Opiate patches without some medical care. You need to have Dr sort out some medication for you that helps.

I am in Canada and wear Fentanyl patches. I have been dealing with fibro for over 20 years and have tried many meds. Fentanyl is what works for me.
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Re: Where to begin....

Postby denys » Fri Dec 06, 2013 11:43 pm

Hi Sara, sorry to hear you are having so many problems with the medical profession but :welcome: to the forum :cow-wave: :cow-wave: Hopefully you can get some help from the site
Denys

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Re: Where to begin....

Postby sara_elizabeth » Sat Dec 07, 2013 12:36 am

oh yeah, I'm well versed in fibro...I usually end up educating doctors because I know more than they do after watching my mum and then I grew up with it. I've read everything there is to read, I do research constantly and consistently educate. Helps to work in the information business (librarian by trade!) so I'm a bit obsessed with knowledge.

My patches come from the pain clinic and my GP writes the rx. That's an all good for the moment thankfully! I'm wearing the lowest dose and I swap them all around my bum and hips even though it says to use arms and shoulders because I don't find it as helpful on arms and shoulders and my skin doesn't tolerate the patches as well there, just more general bodily wear and tear they get more roughed up. Tucked on a hip they stick their week much better!

Sadly all my fibro problems are complicated by a debilitating migraine disability (they tell me it's a disability, they started at 6 years old and for the last 14 months I've had a persistent migraine and I'm medication immune...burned through them all and nothing breaks my migraines.

Pain on top of pain. And a husband who is loving and wonderful but doesn't understand and it's frustrating trying to explain why I'm struggling to get out of bed when he doesn't need sleep and I don't know what it's like to feel well rested :(
I have loved to the point of madness, that which is called madness, that which to me is the only sensible way to love
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Re: Where to begin....

Postby whoami » Sat Dec 07, 2013 3:51 am

Sara...glad to hear that your patches are sorted. I was worried that you did not have a Dr who would give you a new RX .
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Re: Where to begin....

Postby FluppyPuffy » Sat Dec 07, 2013 12:29 pm

:welcome: to our little FibroFamily Sara :cow-wave: :cow-wave: :cow-wave:

Sorry to hear how things are at the moment :( :( :( The loss of Professor Davies earlier this year was a massive blow to those who found his approach and treatment helpful.

Have you asked your GP whether they would be prepared to prescribed Milnacipran "off~licence" for you?? I know it's not the ideal solution to accessing a med, and will probably be more more expensive, but may be worth asking about, esp if you can show how beneficial it was to you previously.

There is lots of info and advice across the boards, so have a bit of a looky as you find your way around the place. Anything you want to know about, just ask away and we'll try to help you with it :cow-wave: :cow-wave: :cow-wave:
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