MDJunction - People Helping People
 

Why wear a ribbon?

 
"Hello, I have Pots syndrome. fibromialgia, chronic pain. D.A & emotional.. God..." (cable16)

MDJunction to me

tomboykimi"What MD Junction means to me is a place where i can feel like im not alone. As someone with something as rare as hydrocephalus, it feels like im the only one in the world with it. When i came to MD, its like everyone has it. It doesnt feel like im alone. And that people need to hold up a sign to say what i have, because people know. And they understand. I can get questions answered from people who have been through it rather than from doctors or people who only can tell you from a physical standpoint. THat is what MD junction means to me." (tomboykimi)

more testimonials
Fibromyalgia Online Support Group
A community of patients, family members and friends dedicated to dealing with Fibromyalgia, together.
Join This Group
Group Home   Forums   Articles   Members (7606)   Diaries   Videos   Leaders   Guidelines
FMS Group RSS Feed
FMS ForumsIntroductions & Personal StoriesNewbie who loves this forum
10/20/2009 10:31 PM
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

Reply

10/21/2009 09:59 AM  Top
stillhopeful
stillhopeful
 
Posts: 4723
VIP Member
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

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Christine

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I am not a doctor, but I sure do make a lot of visits to them. Any information discussed with you, is just my personal experience or information givn to me. I am not your doctor, please call him/her if you are having problems.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
When you get to the end of your rope, tie a knot in iit and hold on tightly. You will get through your problems, because we are all here for you.

Previous discussions I participated in:
Dealing with major hip pain
HI
Court Today

10/21/2009 01:12 PM  Top
raynedae
raynedae
 
Posts: 8219
VIP Member

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

rayn

I am not a medical professional so please exercise common sense when it comes to my advice.

I am also NOT a lawyer so exercise common sense when it comes to my advice.

I was a bookseller so you can trust my advice regarding books :)

www.operationbeautiful.com

Previous discussions I participated in:
I spent most of my day yesterday
Training for a 5k
Dr. Oz

10/21/2009 01:48 PM  Top
hatbox121
hatbox121
 
Posts: 10501
Group Leader

Amy~ “When you come to the end of your rope, tie a knot and hang on.” ~Franklin D. Roosevelt

Current dxes-Ehlers Danlos Syndrome, Mitral Valve Prolapse w/regurg, 2 other heart valves with regurg, POTS, DDD, scoliosis, various OA, polyneuropathy of unknown origin, SI joint dysfunction/fusion/collapse, chronic rotar cuff tendonitis, impingement syndrome of the shoulder, chronic bursitis in various locations, degeneration of the sternum, vertigo, GERD, FM, CFS, CPS, various bone marrow lesions, brain lesions of unknown cause, migraines, TMJ, vertically bulging discs, Raynaud's, anemia, tinnitus, high copper levels, borderline glaucoma, colon polyps, intermittent RLS, Vit D deficiency, depression, Eye accomodation disorder, Essential tremor, recurrent kidney stones, sacral spine disorder, inflammed tendons, and inflammation of spinal nerves(no specific dx).

I'm am not a dr. I am not a substitute for a dr. All advice I give is based on research and my personal experiences.

10/21/2009 04:28 PM  Top
Auntie3285
Auntie3285
 
Posts: 9086
VIP Member
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  Top
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  Top
raynedae
raynedae
 
Posts: 8219
VIP Member

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).

rayn

I am not a medical professional so please exercise common sense when it comes to my advice.

I am also NOT a lawyer so exercise common sense when it comes to my advice.

I was a bookseller so you can trust my advice regarding books :)

www.operationbeautiful.com

Previous discussions I participated in:
I spent most of my day yesterday
Training for a 5k
Dr. Oz

10/26/2009 04:27 PM  Top
stillhopeful
stillhopeful
 
Posts: 4723
VIP Member
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

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Christine

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I am not a doctor, but I sure do make a lot of visits to them. Any information discussed with you, is just my personal experience or information givn to me. I am not your doctor, please call him/her if you are having problems.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
When you get to the end of your rope, tie a knot in iit and hold on tightly. You will get through your problems, because we are all here for you.

Previous discussions I participated in:
Dealing with major hip pain
HI
Court Today

10/26/2009 04:47 PM  Top
tracy6878
tracy6878
 
Posts: 574
VIP Member

i think the latest news says it may be auto-immune and possibly curable...

Look me up: www.facebook.com/tracys_in_love

Love, Liberty, & R[̲̅ə̲̅٨̲̅٥̲̅٦̲̅]ution to everyone!!! Ron Paul 2012!!!

Managing Chronic Pain:
Your Basic Rights:
People with chronic pain are often “people pleasers.” We find it hard to express our needs and require that others respect them. And when our needs are not met, tension is increased and our pain seems worse. But you do have the same basic rights that you grant to others.

You have the right to:
1.Act in a way that promotes dignity and self-respect.
2.Be treated with respect.
3.Make mistakes.
4.Do less than you are humanly capable of doing.
5.Change your mind.
6.Ask for what you want.
7.Take time to slow down and think before you act.
8.Ask for information.
9.Ask for help or assistance.
10.Feel good about yourself.
11.Disagree.
12.Not have to explain everything you do and think.
13.Say "no" and not feel guilty.
14.Ask why.
15.Be listened to and taken seriously when expressing your feelings.

Read and reread these rights so that you not only know them by heart, but so that they become part of your daily life.


Success is not final, failure is not fatal: it is the courage to continue that counts.
~Winston Churchill

Love and many hugs, dear friends ~tracy

10/26/2009 05:12 PM  Top
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

Reply

Share this discussion with your friends:
Members who viewed this page also read:
<< Start < Prev 1 2 Next > End >>

FMSFMS ForumsIntroductions & Personal StoriesNewbie who loves this forum

Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | Bookmark Us | FAQ | Awareness Ribbons
About Us | Terms & Conditions | Privacy | Spread the Word | MDJ Advocates | Advertise
Copyright (c) 2006-2013 MDJunction.com All Rights Reserved