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10/20/2009 10:31 PM

Newbie who loves this forum

ckrken
Posts: 8
Member

Hi one and all from Australia. I was told I had fibro a couple of months ago after running around madly undertaking all types of tests. It is believed to have been triggered by the Pulmorary embullism that I had Feb last year. I just never seemed right after that. This also didn't help with the onset of menapausal arthritis as this masked the fibro for quite sometime. For a person who was lucky to take a headache tablet a couple times of the year, and be lucky to see a doctor once a year for a regular checkup it is very frustrating.

I cannot pick what annoys me the most, the constant pain, the stiffness/soreness, the constant buzzing in hands and feet or just feeling unwell all the time. I have to plan my activities to minimise what I call "PAYBACKS" where there is excruitating discomfit at night and do I hate it when the 'flu' symptons occur, you know you don't have the flu so there is no excuse for staying in bed and pretend that it is.

Currently Fibro is only just recognised here in Australia so all those wonderful drugs such as Lyrica and etc are not available on our PBS scheme which places it way out of my price range.

I seem forever taking medications, there are Methotrexate, Plaquenil, Codapane (painkillers), Folic acid and Endep (sleeping and antidepressants). Every thursday I go to hydrotherapy and while that feels wonderful it is one of those activities that has a "PAYBACK" effect. I am hoping that with exercising everyday the hydrotherapy won't hurt so much afterwards.

I have a wonderful husband who believes that when menopause is over then my life will be back to where it was before - I hope so too. He is supportive but like so many other comments that I have read, because I don't look sick or act sick then he quite rightly forgets that I do have my limitations.

Thanks for listening and putting your comments out there it has been wonderful to feel that I am not alone and that others have treaded this path before me and I can only learn from their experiences.

Cheers

Colleen

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10/21/2009 09:59 AM
stillhopeful
stillhopeful  
Posts: 5102
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I'm an Advocate

Colleen,

I am so sorry to hear you are suffering so! I am a little concerned by your post though. I know things are different in Austrailia, but I was wondering if they mentioned lupus to you at all.

I have both systemic lupus and fibromyalgia as well as other chronic illnesses. For my lupus, I take methotrexate (which is a form of chemo-therapy) and plaquenil. I have never heard of those drugs being given for fibromyalgia. Do they seem to help your symptoms? If they do, I am happy to hear that. I am sorry to hear that you cannot get the drugs that we have here for fibromyalgia.

Please keep us posted on how you are doing and welcome to our family. We are happy that you found us and that you like it here. I am totally addicted to the site!!

Gentle Hugs~

Christine


10/21/2009 01:12 PM
raynedae
raynedae  
Posts: 8219
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Colleen! Welcome to the group, I'm so sorry I neglected to welcome you before.

You've found the best site on the web for wonderful, supportive people who are going through many of the same things you are. We do have at least one more Aussie who participates.

I forgot about the buzzing in the hands and feet...that was one of my earliest symptoms during the big flare that lead to my diagnosis. I've been in remission from the worst of the pain so I tend to forget these things. In remission from pain but obviously not from fibro fog LOL...

Have you tried neurontin? It's a generic in the US that is very similar to Lyrica but with fewer side effects.

Again, my apologies for not welcoming you sooner. I'm feeling a bit flu-ish (is it the flu, is it fibro?) today so I didn't welcome you properly

I'm so glad you found us but sorry you are suffering.

blessings


10/21/2009 01:48 PM
hatbox121
hatbox121  
Posts: 11098
Group Leader


10/21/2009 04:28 PM
Auntie3285
Auntie3285  
Posts: 9183
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I'm an Advocate

Hi Colleen,

Welcome to our group ~~~ We re happy to have you join us . Smile

I am sorry to hear that you are suffering as the rest of us are with this nasty Fibro. Trust me, (if I may be blunt) but I seriously doubt that your Fibro will disappear once menopause is over, sadly. I am past the meno stage and I am worse now then I was back then.

Fibro has been around the States longer than I truly know ~~~ Even tho' I have had it longer, I was just dx d in 2008. I DO take Lyrica for it but not the higher dosages that some do. (That, too, might soon change as my pain is becoming more constant and severe.)

Again, welcome ~~~ I hope you will join us on a regular basis so that we may get to know you better. I realize there is quite a time difference between here and ""Down Under"" but there is almost always someone of us here 24/7.

Marilyn


10/25/2009 09:24 PM
ckrken
Posts: 8
Member

Hi to one and all, sorry for not responding individual to all replies, but still recovering from my hydrotherapy. I have had two visits and the last one on Thursday had the resistance level increase which unfortunately put me in bed for 3 days. It inflamed my Fibo so much that it was pure agony- my joints still feel red raw. I call the physio the next day to let her know so we can tweek the treatment sessions.

Here in Australia many of the drugs that you talk about are only available to those who suffer epilepsy and similar ailments. Hopefully my referral to the Pain Management Department in Adelaide will find something similar that will work.

I will speak to my local GP about Neurontin and see if it is possible for me to receive it on prescription.

One thing I don't undertand about Fibro is that is is an autoimmune problem?

That's it for me - time for the afternoon nap as I am utterly exhausted and wornout.

Cheers from a very sunny South Australia

Colleen


10/25/2009 10:58 PM
raynedae
raynedae  
Posts: 8219
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Hi Colleen,

They're not sure if it is an autoimmune disease or not. Right now I think they're thinking it might be a retrovirus that they just identified at a lab in Nevada. Technically I don't think it is an auto-immune disease...although some autoimmune diseases can lead to fibromyalgia (like lupus and MS).


10/26/2009 04:27 PM
stillhopeful
stillhopeful  
Posts: 5102
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I'm an Advocate

Colleen,

I agree with Rayn. I don't think it is actually considered an auto-immune disease. I have lupus and was diagnosed with fibro many years later and was told that it came because it was an overlapping problem caused by my lupus.

I am glad that you enjoy the group so much. I really enjoy it as well, but haven't been on as much due to not feeling well at all.

Hugs~

Christine


10/26/2009 04:47 PM
tracy6878
tracy6878  
Posts: 575
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i think the latest news says it may be auto-immune and possibly curable...


10/26/2009 05:12 PM
ckrken
Posts: 8
Member

Thanks Tracy I have a feeling that it maybe autoimmune mainly as it requires a trigger. I have a family history of autoimmune diseases which is why I thought Fibro maybe related. From what I have read there are several different camps of thought on the issue so I am keeping an open mind. As for the curable part I keep my fingers crossed as with Diabetes 1 they are finding success with stem cells.

Cheers

Colleen

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