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When were you diagnosed and how far have you come
13 Replies
axxie - February 8

When were you diagnosed
how long did it take for you to get proper medical care
meds you taking
where you able to return to an active lifestyle or always maintained it.
only if you want to answer the last two question your sex and age, reason is most of us are female and of a certain age, but looks like we have more and more younger one who are getting fibro.

 

axxie - February 8

I'll start:
diagnose: 2007 or 8 not too sure
I one doctor who only fed me cymbalta and trazadone wasn't enough didn't even touch my pain level.
Changed several doctors, finally found two great doctors, one who takes care of my pain and the other who takes care of my well being.
I am now on Ralivia 100mg for pain two times a day, but can up to 3 if pain is difficult to cope with.
Put on hormone level and uped my thyroid
Have returned to full time work this january, it took me a year before being able to go to full time.

How do I feel, tired if I don't get a least 9 hours of sleep a night, only because of the homornes can I sleep so well.

Emotionally somedays are betters then others, I still have problems with excepting that I am ill, physically and emotionally.

I'm female and I'm in my 50's

 

Cher0208 - February 8

Hi Axie,

I was diagnosed summer of 2010 but symptoms began early last year, around May.

It took me a few months. I cried everyday. No knowing was the worst.

I have been on Savella for 2 months maybe. And I am weaning myself off because it lowers my blood pressure and makes me dizzy and makes me a little constipated. I should have asked me doctor first though because the pain is getting pretty bad as I am now down to a quarter tab twice daily.

I have changed careers. I was working in a hair salon in NYC on my feet for 10 hours a day. I hated it but also it made the pain much worse and the fatigue as well. I'm back to being an Administrative Assistant part time but this isn't paying my bills or my Cobra health insurance so I desperately need to find something full time.

I am a female and turned 26 today!

 

Sandybeach - February 8

Hi all.....
I was diagnosed in May 2008. When the specialist told me i like...oh wow..what about my job my life etc....to that he replied carry on working till you are able, of which i did,but the last 12 months have been a terrible struggle to maintain daily life let alone got to work.So now im not working..my mind wants to but my body is unable,sometimes on the rare good days i get i want to be really busy and active and as we all know isnt the answer as we burn ourselves our on our good days.So now i plod on and do what and when i am able.just got to see fibro specialist after 6 months of stressing to my gp that he dont know enough about my illness.Really pleased too,they gonna let me have a little physio twice a week,and conginitive behaviour therapy...CBT.. as sometimes i struggle to accept this illness.Maybe it helps maybe not,who knows but something else i"m willing to give a go.Was prescribed Amitryptaline last week,no change yet,but still early days with my fibro specialist and as we all know its trial and error,what suits 1 person may not neccesarily suit another.So on we plod..

Im female...46 now..43 at Diagnosis

 

sleepingin91 - February 9

Diagnosis: June 2010

Time it took: 6 months although I am still waiting to find a good rheumatologist (dumped the one that diagnosed me after 2 sessions as he just wanted to try and prove I have rheumatoid arthritis despite having no symptoms.
My GP is currently managing my symptoms whilst I wait for my appointment with a new rheumatologist in March.

Meds: Nexium 40mg, Cymbalta 30mg, Tramadol 50mg when required.

Luckily I have always been able to maintain my full time student life whilst not having a job although I assume that once I have one my life will become more complicated and sore. Ever since being put on Cymbalta my pain has dramatically reduced and I only seem to get flares once a month or so, generally when stressed.

I am a 20 year old female, 19 at diagnosis.

 

kiwiang - February 9

diagnosed january 2011 diagnosed with cfs which i suspect was fibro in 2009 when symptoms began.
lexapro 10mg daily endep id need to sleep 12.5mg
b12 1000mcg injection as needed(pa)
took about 6 weeks on lexapro to get back to 70%
of activeness prior.
female age 40
have given up working which i am lucky to be able to do with a supportive family.

 

OnaJourney - February 9

I'm new to your group. I recently posted comments under other topics.

-Diagnosed Sept. 2008
-Saw a variety of doctors for about 4 years before diagnosis
-100 mg Lyrica twice/day (every 12 hours)
-still do not have normal active lifestyle. FMS became full blown as I took an early retirement
-Female; 61

 

Stacey373 - February 9

Hello Everyone!
I'm 37 years old (female), been having problems since I was about 25. Started to have major problems around 27 years old (after I had my 3rd child) Spent all those years going to doctors in 3 different states that all told me it was in my head. My family thought I was addicted and just after the pain meds. (my Mother even tried to talk my husband into putting me in rehab)

About 3-4 years ago I finally got a Nurse Practitioner to listen to me, but she never could figure out what was wrong with me. Was diagnosed 2 years ago (Dec 2009) when I did the research and took it to her and told her what was wrong with me. (she agreed with me)

I spent the first 1 1/2 years after being diagnosed fighting this illness and not understanding it. Finally figured out that knowledge really IS power and with the help from everyone on this forum, I'm learning how to live WITH this illness.

I think I've probably taken every kind of medication out there....but right now I'm taking Norco, methadone, flexeril, Lexapro, Vitamin D, Vitamin B, and Magnesium. (I think that's all!)

At this point, I'm "maintaining". I have my ups and downs, but I was able to go back to school last month. I wish I could say that it's been easy....but honestly, it's already become a struggle. I'm trying not to be too hard on myself when I miss a day just so I can stay in bed and sleep all day.

My "philosophy" is to take it one day at a time, keep a positive attitude, and appreciate everything I can do instead of focusing on what I can't.

 

Fantod - February 9

August 2007
Immediate proper medical care - already knew what was wrong before I saw the rheumotologist
Cymbalta,gabapentin and a variety of homeopathic remedies
Lifestyle now subject to the whims of Fibromyalgia or force of will depending on the day
57 and female

 

CoastalNC - February 9

Hi axxie,

I'm 57, female and I began sypmtoms in 97 after a car accident, diagnosed when I fell into total 24/7 severe symptoms in 06 due to mental stress. I haven't had a day of relief in 5 years so far.

I tried the cymbalta, etc and they only made me crazy and have car accidents, quit them. Used darvacet at night to help me sleep until they took it off the market. I've been taking guaifenesin for 18 months and had improvements in everything except the pain and fatigue (tmj went away, gums stopped bleeding, fibro fog went away, short term memory returned, started dreaming again, fingernails growing out clear again, IBS improved enough I could go back to work, reynauds improved/gone, hair stopped falling out, etc.)

Currently taking only the guaifenesin but I have ordered something for adrenal fatigue to see if it will help. My fatigue is so much more than fatigue, it feels like I'm carrying a house on my shoulders, the weakness actually causes some of my pain...especially with standing and walking...which I can do very little.

I have not returned to my life yet but I do still work...only because I park at the office door, there are no steps and I sit in my chair at my desk all day except to take a bathroom break. AND my boss is really good about letting me come in late when I'm unable to get through the am pain/weakness and get dressed on time.

My husband cooks/shops, my friend cleans my house, I'm pretty much a lump in the bed/chair except dragging to work.

 

LadyNae - February 9

Axxie,

I was diagnosed last month....looking back though I have dealt with symptoms since I was a teen. The symptoms were always blown off as me being overweight or in my head. I went to a dr. for two years and she actually labled me as a drug seeker because I was getting no relief from the narcotics she had me on. I brought up the issue of fibro one day and she told me that it was something that drs. made up when they had no answer to what was causing the pain. I have since switched drs. due to a change in insurance and I love my new one. When I switched I asked for someone who dealt with chronic pain. He weaned me off the drugs that I had been taking for three years and upped my gabapentin dosage to 1200mg three times a day. He also put me on amitryptaline to help me sleep. I see him again this friday and am going to ask about the meds. for fibro to see if that will help.

I still haven't returned to my old lifestyle of working full time, keeping my house clean all the time, walking, camping, and whatever else. My husband has taken to working 45 to 50 hours a week and helps more with the household stuff than ever before. My children help as well. My two oldest girls are learning to cook with me giving directions and supervising. My hubby does all the laundry because we live on a second floor apt. and the laundry room is down two flights of stairs. I can't carry the basket up and down the stairs. I have made some changes in my diet and I feel that that is helping some.

I am 29 years old, and female.

 

Fantod - February 9

For all of you newbies out there that may have seen the previous post about guaifensen, this article comes directly from the Fibromyalgia network:

Guaifenesin is a cough syrup expectorant, but there is a popular theory that it works to help with the pain and other symptoms of fibromyalgia. Now that guaifenesin is also available over-the-counter, it is all the more important that patients be armed with the research on this study. Yes, there was a research study conducted to look at the potential effect of guaifenesin in people with fibromyalgia. Due to the negative results, the study was never published in a peer-review medical journal (so it is not on PubMed), but Fibromyalgia Network interviewed the lead author of the study and wrote the article "Guaifenesin ... Is One Placebo Better Than Another?" below.

After the study showed that guaifenesin performed no better than a placebo, and the blood/urine tests revealed that it could not possibly work as suggested by Paul St. Amand, M.D., the guaifenesin controversy is still alive. Despite St. Amand’s role as advisor for the study design (he selected the doses, etc.), he has since published a book on how guaifenesin can "cure" people with fibromyalgia. There is also a new cosmetic line that does not contain salicylates (vigorously marketed to people trying the quaifenesin protocol as outlined in St. Amand’s book). It is just one example of how marketing "cures" for fibromyalgia without a shred of evidence can add to the wealth of some. The promise of a "cure" sells books, but it also tarnishes the reputation of people with this chronic illness and damages their relationships. With so many bogus cures in the media, patients have a difficult time explaining to family and friends why it is that they are not going to pay for this or that to "cure" themselves!

The intent of this post is purely informational and not intended to be disrespectful to CoastalNC.

But, I will say it again - there is no cure for Fibromyalgia. Guaifensen, Remedy Bands, Dr. Franks Pain Spray and any other snake oil remedies out there for Fibromyalgia are a waste of your money. Work with your doctor to indentify a proper treatment regimen using the classes of prescibed medication that work for the type of pain associated with Fibromyalgia. If you have extreme sensitivites to medication, a compound pharmacy may be able to reformulate them into a dose that you can tolerate. Failing that, see a holistic doctor (preferably a functional medicine specialist) and work with homeopathic remedies. Take care.

 

Fantod - February 9

CoastalNC - Have you had your vitamin D level checked? A low level can result in higher levels of pain and fatigue. Even if you have had it done, do it again. The level can fluctuate wildly. And, your adrenal gland idea is a good one too. Take care.

 

Noca - February 9

I never had a doctor SAY I have fibromyalgia, I just suggested it to my pain clinic physician and he said that I could have it but he would leave diagnosing to a Rheumatologist, the one hes sending me to. I've been in pain for approximately 4 years now with some FMS symptoms starting far before that.

 

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