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newly diagnosed, questions about the future
13 Replies
meltingavocado - March 25

hi everyone,

i've been coming to this website a lot in the past few months as i've been trying to figure out what's wrong with me. it's probably about time that i reach out and say hi to the folks on the message board, it'd be great to talk to others with FMS, especially since i'm fairly new to this whole thing.

so hi. i'm a 28 year old married woman currently in graduate school. about a year and a half ago, i started having foot pain that various orthopedists thought was from tendonitis and plantar fasciitis, until someone finally thought to order MRI's and blood tests. the MRI's showed nothing wrong with my feet, and my blood tested positive for autoimmune disease. then i started having pain in my hands and arms and shoulders, and my primary doctor suspected fibromyalgia. she ran a few more tests to rule other things out, and she gave me the tender point test and sure enough, that's what i have. it's hard to go from having a self image of being young and healthy to suddenly being pained and frail and chronically ill. although when i think of how long i've dealt with depression and anxiety, have had extremely poor sleep and low energy, painful periods and sex, etc., i realize i had practically every other symptom of FMS before the pain started. so it's also weird to think about how i've been sick for a really long time, even though at the time i didn't realize it.

anyway, i'm a philosopher, and so if something is confusing or paradoxical, it drives me crazy and i can't stop thinking about it. now that i have fibromyalgia, i feel like my own life is totally confusing because i don't know what this diagnosis means for me. right now i'm taking lexapro, smoke marijuana (i live in a state where it's legal for those purposes), force myself to do something active every day, take lots of vitamins (C, B, D, fish oil, calcium and magnesium), and do acupuncture. i'm also in the middle of quitting cigarettes, alcohol, and caffeine. all of these things, in their own way, have done a lot to help, but it's still a huge struggle to keep up with school and home and friends. everyone in my life (husband, friends, professors) have been very understanding and supportive, and for that i am extremely grateful. i'm even writing a research paper on the philosophy of pain and suffering, so it's been good to channel my worries into that. i keep hoping that once i get my life more under control, i'll feel a lot better and will be able to do anything. but i'm kind of worried that i won't be able to cut it in academia, because it really demands the personality of an overachiever. i am and have always been an overachiever, so it's hard for me to *not* push myself to work all the time, but now when i do, i hurt all over and feel like i have the flu, so i have to learn to not push myself. i'm also worried about losing touch with my friends. i don't want to be the one who's always complaining about how crappy i feel, but lately that's what's been happening. at the same time i need to do that because sometimes i'll try and go shopping, or go out to a bar or something and i'll be really miserable because i was on my feet too long or the seats hurt my back. so i'm worried about alienating my friends, or about not being physically capable of the social life i want to have.

i guess i needed to vent, sorry about that. i guess my question is this: am i bound to get worse? or is it possible that my level of pain/fatigue/etc would stay the same, or maybe even improve? a lot of the stories people share on this message board are heartbreaking, i just want some assurance that it might be ok. i want to have a rewarding career and continue to have fun and be active. is this possible with FMS?

i don't want to be defined by fibromyalgia. it's hard to accept this as part of my identity, but i'm working on it. but since this hasn't consumed my whole life (yet), let me just say that i like philosophy, art (i was an art history major, and my husband's a graphic designer), cooking, hiking, eastern/central europe, alternative medicine, cats, and lost (the tv show) i'd be happy to talk about any of these things and more, but i guess we're all here to talk about fibromyalgia. anyway, thanks for reading, talk to you soon!
-c.

 

Fantod - March 25

Hi Meltingavacado and welcome to our little soiree -

I have an appointment this morning so I don't have as much time to respond to your post as I would like. There will be more later.

The key point I want to address right now is that your blood tested postive for an autoimmune disease. Fibromyalgia (FMS) does not work that way in terms of a blood test. And, your doctor should know that. The only "definitive" test is the tender point test. It is not going to show up in any blood test that I know of in conventional medicine. I see that you are also a fan of alternative medicine like me. Even if a holistic doctor came up with those results I would still be extremely concerned that there is something else going in addition to FMS. Many of us have several underlying issues in addition to FMS. I'm really sorry to alarm you but that comment stuck out like a sore thumb on your post. You need to see a rheumotologist ASAP to rule out other possibilities. You can go to the National Fibromyalgia Association website and register. Then you will be able to see a list of fibro friendly healthcare professionals in your area. You could also call your local hospital physician referral service and ask them for a rheumy with an interest in FMS. Take copies of all of your recent tests and bloodwork with you to save time and money. As I mentioned, I have an appointment this morning but I am going to respond to some of your other concerns later today. Take care.

 

meltingavocado - March 25

hi fantod,

thanks for your comment and your concern. i should clarify something about the autoimmune blood test thingy. i do know that FMS can't show up on a blood test, and i did get some follow up tests that made me worry a little less about it. first of all, my doctor told me that it was likely it was a false positive, and that happens sometimes with this particular tests (and my numbers were very close to borderline), and she ran that same test on me a few weeks later, and this time it came back borderline-negative. she also tested me more specifically for rheumatoid arthritis, and all those tests came back negative. i don't have any other apparent symptoms of any other autoimmune disease (like lupus or reynaud's). but i mentioned that because that was the thing that first prompted her to think fibromyalgia. and since the stuff i'm doing does seem to help with the symptoms, to an extent, i don't feel the need to go to a rheumatologist right away. i will this summer though (when i have more time!), just to establish a relationship, but if anything else weird comes up before then, don't worry, i will go to a rheumatologist. :)

 

Fantod - March 26

Thanks for additional information. When you do get to the rhuemotologists be sure to mention it anyway.

I'm having a sever bout of fatigue. I haven't forgotten about you. I'll try to continue later today.

 

angelwing - March 26

Hello Melting, good to meet you and all those on this site. I'm new here but not new to Fibromyalgia. I was diagnosed with Fibromyalgia/MPS back in 1992 but had been suffering with it for some time before that. Doctors back then wanted to call it everything from "housewifeitis" to "over doing it." They just never could put their finger on it and really didn't believe in Fibromyalgia as a valid problem. It wasn't until I found a Rheumatologist that was more familiar with it and knew how to check for it that I was diagnosed with it. I was then able to get on Disability because the pain and general unpredictability of the condition made it hard to hold down a normal job for me.
To answer one of your questions, for many, including me, it can increase in severity. The doctor told me at the time that it doesn't but mine definitely has over the past 5 years especially. I had my own business for about 10 years and I finally had to close it down this past summer due to the constant fatigue and pain in my back and legs. I'm on strong pain meds that have helped but even with them I still can't keep up with everything. I also have sleep apnea and stay sleepy all day from it which makes it tough getting anything done. If I sit down for more than a few minutes I tend to dose off. That can be embarrassing if you are in church. LOL
My general practitioner is well versed on Fibromyalgia thankfully and keeps an eye on my blood work. A lot of doctors don't like to prescribe pain meds so you just have to suffer with it. They don't understand what you go through on a daily basis. I hope you have a good regular doctor that will strive to keep you pain free. There is no cure for this and like my Rheumatologist told me recently "you'll have it until the day you die."
My worse days are when the weather changes, especially rainy, cold days. Seems every joint in my body hurts. Also if I do much exercise the next day I can barely move with terrible pain in my back and legs. I know you should walk as much as you can without overdoing it. Do everything with moderation, especially any physical activities. Good luck with your doctor.

 

Fantod - March 30

I'm back to address your concerns about being defined by Fibromyalgia (FMS). In general, FMS as you know, is very difficult to manage and live with. All of us have had to learn to respect the boundries dictated by this illness, learn to say "no" and mean it without feeling guilty and expect others to not really "get" what we are experiencing on a daily basis.

There is no way to predict how FMS will progress. I can say, however, that if you keep on with the breakneck pace you currently live, at some point things will probably get a whole lot worse. Waiting until you "have more time" to see a rheumotologist is ludicrious. Taking care of your health should be your number one priority. FMS places a huge strain on the body as a whole. The longer a chronic pain cycle goes on the harder it is to stop or manage. If you expect to continue in your chosen field in any capacity than making sure you are managing this syndrome to the fullest extent possible should be moved to the top of the list. And, finding a good rheumotologist who is knowledgable about FMS is tough. Most of us have been through a parade of doctors to find the right one.

At some point, you will come to realize and accept that you can not be all things to all people. There is a grieving process that goes along with a diagnosis of FMS. Finding a life balance is pretty much impossible with FMS. You either go with the flow or pay the consequences by pushing the envelope. I've learned to be grateful for anything that I accomplish no matter how piddling. I have found things to do that keep me occupied without a lot of physical effort. My primary focus is genealogy. I've been working on the maternal side of my family for about 15 years. Even on bad days, I usually work on my computer for a while. I feel productive, engaged and having to pay close attention takes me away from focusing on how lousy I feel. I also love to read. I guess my message is that at some point everyone learns to adapt and carry on. It gets frustrating at times but dwelling on the losses is a waste of positive energy that is needed elsewhere.

I keep in touch with my friends through email or telephone. Instead of shopping, they may pick me up to go to lunch or offer to come over and help me with household chores while we hang out or just hang out and chat. I have a wheelchair now so I can go on an extended outing if I feel up to it. I keep a calendar of important events like anniversaries, birthdays and so on and a stock of cards on hand. I mail cards out with short notes as another way to stay connected. In other words, I do what I can and not what everyone may want me or expect me to do. With FMS, learning to think outside the box is a necessity. You sound like a very creative person so I know you'll understand that concept.

I like cats too. I don't have one at the moment but I have a friend with a particularly stubborn feline named "Pooder." She is really comical and I enjoy playing with her. I got her a couple of zhu-zhus (children's hamster like toy) to play with which she loves. We have a big mound of tissue paper on the floor - the zhu-zhus run around under the tissue paper and she dives in to attack. All of the elements that cats like, crinkly paper, erratic movement, funny noises and the element of surprise. Thank God my friend is tolerant of our playtime mess...

I'm also interested in alternative medicine. I'm extremely sensitive to medication and have had some really weird reactions. I just started seeing a functional medicine specialist. This is an MD who has a strong background in holistic medicine. I actually found two who take insurance which is rare. She just did a comphrensive blood test through Genova Diagnostics (on the web) called the Nutraval test. It takes five weeks to get the results. I am hoping that this test will give us a better idea where things are going haywire in my body. The report that comes back looks like a small phone book. I've used accupuncture too with good results. I had to stop because my insurance did not cover it (ridiculous). And, because of my medication sensitivities, I use some homeopathic remedies to treat pain and sleep issues.

I hope that comments were helpful to you in some way. Keep in touch and let us know how you are doing. Take care.

 

huskymom - April 4

Hi, Meltin, I was just recently diagnosed with Fibro. About a month ago. But have been sent to this doctor and that, I have had MRI's Cat Scans and blood work. Finially the Neuro. Dr. did the point test on me and I had 17 out of 18 tender spots, since no one knows what causes this they wanted to really due a through work up on me. Last yr I had to have two surgeries, My first in 51 years. I had to have surgery on my c4andc5 in my neck then 5mo later I had to have surgery for a torn rotorccuff and beicepe. Since then I have never been the same. I have terrible pain in my arms, legs, shoulders, neck, hips down to my knees some days I can't walk without a cane. I see the active life that I use to live slipping by me. I lost my job in the Factory last year, and now I am back in school after 30 years. I have had anxity attacks, Fibro fog and sleepiness which I can go to bed and sleep for 36 hrs. and still wake up as tired as I was when I went to bed. I have a wonderful Family doctor who I have been seeing for 21 yrs. So when I told him all this and he looked at all my test. He has been great right now he is trying to work with my muscles by Waking them up in the mornings and putting them to sleep at night. I take Cymbalta in the mornings along with Conerta this is to control the Fibro Fog and deal with the pain, then at bedtime I take felxerl to help my muscles go to sleep. I am very grateful for relief that I get most days, but I still suffer from pain every day, just not as bad as I did, and then on raining days or real cold weather, humid days I still have days where I can't hardly move. where I lie in bed and wish I were dead. My family and friends don't understand my Fibro, because I look healthy and I have gained so much weight. Only all my weight has went straight to my belly, I look pregant. They say exercise is the best med. yet you have to be able to get out of bed for that. So on good days I go to Zumba which I love, and I do some excises that my Big ball, one that really helps my neck and arms is to lie on ball and do the A B C 's with your arms. sounds easier than it is. I am learning not to make to many committments so I don' let people down. I also go to web sites like this just to remind me that I am not alone and that I am actully lucky compared to some. I really feel sorry for those who have had this for many years or are young when they get it. Though I guess I had signs of it since I was twenty, with TMJ, restless leg syndrome and bouts of depression. Yet, I still wish that someone would work on a cure and I wish that there was away to make this more known so people would not look at you like you are crazy. So I pray that you don't have Fibro, and if you do try to exercise as much you can. and seek help now so you can get it under control before it gets worse May God be with you

 

elephants - April 9

Hello - I feel a wee bit shy of posting as i haven't done this before AND hope i am doing it correctly now :) I live in Australia , I was diagnosed with "Fibro" five years ago but probably in retrospect it began before that. I have done massive research and am happy to share any of my info - but also don't want to barge in :) I have been educating my doctor for the last five years and I am lucky she takes it all with good grace :)Mind you I had to find her -not easy as you all know!!! Your group seems very good,kind etc - so I would like to be a part of it
Thankyou - where do I go from here ??

 

Fantod - April 10

elephants - Welcome to the group! We have other people from Australia as well. Whenver you see a post that interests you, please join in. All of us are open to new ideas and information. And, we are all here to support one another. Take care.

 

elephants - April 11

Hi Fantod

Thankyou for answering :)

Hugs Elephants ( in Sydney :)

 

madamxnm - June 6

HI,

I also have been diagnosed with fibromyalgia. I am a 32 year old married mother of six. I was a Table games dealer for twelve years before my illness forced me to quit my job. I am now2 having to file for my disability and have had to get foodstamps to help feed my family. I to used to love to go hiking , fishing, camping, and anything else having to do with the outdoors. Unfortunately I have had to limit almost everything that I do in a day. My husband and kids have pretty much had to start doing everything around the house. I always said that I would not let my illness take over my life but after having this for almost three years now I have had to quit fighting and finally accept the fact that this is not going to go away. It is hard to have to go from being able to do everything you want when you want to having to plan everything based around how you are feeling that day. Well I guess I will stop for now I just wanted to let you know that I know how you feel and if you need to talk to someone I will be more than happy to lend you an ear.

Sincerely,
Melissa

 

ptalana - June 7

Hi all, and a great big welcome to everyone :)
Hmmmm, I've also been doing a great deal of soul searching lately in regards to dealing/learning to live with fms. While it most certainly shouldn't define who we are as individuals, it is now a part of who we are. Trying to pretend it's not there has caused me too many problems, and not just physically!!!
I've also been doing research on fms and have learned that many sufferers are overachievers by nature. Women who take on every challenge in life head on, and successfully!!! This didn't really surprise me as I've gotten to know so many on this forum who totally fit this bill. This in and of itself causes the issues we face in accepting this diagnosis, and the effects it now has on our lives.
For those who I haven't spoken to before now, I'd like to introduce myself. My name is Patty I'm a married 49yr old mother of four. I was diagnosed a lil over 2yrs ago. My journey actually started five yrs ago following a severe fall at work. I was going down to take my last break of the day, and I noticed that the stairs were wet. The day before we had a huge snow storm, so seeing the wet on the stairs didn't really surprise me. But since it was a large amount I couldn't just walk around it. I should add that these stairs were deemed unsafe for our clients (this is a bank) as they were extremely steep, and had a very shallow footfall, I had to walk down these stairs sideways in order to fit my size eight foot. As I was putting down my purse to retrieve some tissues to mop up the mess, I must of stepped in the wet and began to slip, I tried to stop myself from falling but couldn't. So down I went thirteen steps landing on the concrete landing on my head. I did hit a step on my way down, breaking my nose and ribs, wrist and hand, also received 13 stitches to my head. I came to shortly after the fall, thanking God that I was alive. I suffered a head injury, nerve damage to my neck and spine, double lumbar scoliosis, degenerative disc disease, arthritis in my hips and knees, and hands. It took over a year to get over the severe concussion, but it left me with severe vertigo. Along the way I've developed almost all of the associated conditions that come with fms, not to mention a severe form of fms. I don't get any days without the pain and do have to take many pain killers to get through each and every day.
My employer has not been in any way supportive!!! My boss approached me one day and told me to get legal advice and take action as the bank was going to turn their back on me. Which indeed is what happened, we have been in litigation for almost three yrs now. I've been fighting for my long term disability which I haven't been receiving for over 2yrs now. We are now nearing resolution, it's been a very eye opening experience for me. Many of my co-workers who I considered family turned their backs on me, even going so far as lying to protect the bank. Only one was willing to come forward and tell the truth, the others were too afraid. I do understand this as they see that we're financially ruined. Hopefully we can begin to rebuild our lives very soon......
I have come to accept the new challenges in my life, extreme mobility issues (wheelchair, and walker). I've lost my ability to drive due to the extreme vertigo, I actually passed out while driving one day, thank God I didn't hurt anyone!!! I can no longer sit or stand for any longer than 1/2 hr without going into extreme spasms. Working is no longer possible, and so for the first time in my life I'm not bringing in a income (I hate this)!!! I really miss working and most especially my clients who have shown me so much love and support. It has taken me 2yrs now to get over the grieving process, and begin to move forward. I've learnt to let go of the control, very difficult as I'm definitely used to running the household. I totally fit the over achiever profile!
While I've had to adapt, I know how much I can and can't do. I do a pilates program 5x a week, while at times difficult once you get started it gets easier. I try to do what I can around the house, and I've learnt not to beat myself up for not being able to do some of the more strenuous chores.
I love "Lost" as well, and am so sad that it's over. But I love suspenseful movies, and books. Love to watch home improvement programs, anything on HGTV, TLC, and the DIY network. I can't wait for Dexter to start up again, also love Medium, Criminal Minds, Nurse Jackie, and True Blood. Also I'm currently working on a book about what I've gone through these past five years, it's titled "Confessions of a broken banker". My hubby and I also have five super grand kids who we enjoy more than anything. I've also been blessed with the greatest in-laws who have been so supportive, more so than my own family. As well as my forum family, who have helped me each and every step of the way.
This forum is full of kind and understanding people who are always here when you need them. This forum also provides a great deal of info in the blue boxes on the left side of screen. With fms knowledge is power, and I would suggest reading all this info.
Once again welcome to all the newcomers, I look forward to getting to know you all.
Wishing you all a super day, and sending gentle fibro hugs, Patty :)

 

EndoFibroGrl - June 24

Hi Meltingavocado,
I've been reading these forums all morning but yours made me register just so I could comment to you. My primary care Dr diagnosed me with fibromyalgia just over a month ago only going by the symptoms that I was having (pain in every joint you can think of and tingling 1 or 2 times a month in my feet and arms). What caught my eye in your post was when you said "painful periods and sex". I have had endometriosis since Dec 08. When you have endometriosis you are 20% more likely to get other autoimmune illnesses, and I was a luck one beacuse now I have two very painful, incurable illnesses. Have you ever gone to your Ob to talk about your periods? Because since the time I've had endo I've been learning more and more about what women think a "normal" period is and who knows, if you have had horribly painful periods most of you life you may have had endo and not known it and then developed fibromyalgia. I hate to put this thought into your head but if you haven't seen an Ob for your painful periods and painful sex then you should go. Birthcontrol is the treatment for endo unless it gets really bad. I would hope you don't have it but having both of these illnesses is horrible and you should get it checked if you havent. Period and sex shouldnt be painful.

Thanks for listening. Take care

 

Stacey373 - June 24

Hi! the "painful periods" thing caught my eye and I wanted to reply to that. Endofibrogrl mentioned the endometriosis and I wanted to also mention the possibility of you having Dysmenorrhea. It's all explained in the "Associated Conditions" box on the left side of the page. (If I remember right, it's under women's health)

I never had problems with my periods growing up. I never had cramps or heavy bleeding and didn't even understand what "moody" or "PMSing" meant! I barely even noticed I was on my period! And then about 10 years ago after having my 3rd child, my periods started getting worse. It progressed through the years to the point that I was literally in bed for several days each month with HORRIBLE cramps, HEAVY bleeding, guaranteed a headache or a migraine, and even my back hurt so bad it felt like I was having "back labor", and many more other symptoms.

My doctor has tried me on Several types of birth control to try to ease these symptoms. But I must be "overly sensitive" to the hormones because even the "lightest" of these meds gave me Horrible side effects and I couldn't take them any more.

I did some research about all of this and took my "findings" to my doctor and she agreed that I was suffering from Extreme Dysmenorrhea. Since then nothing has been done...but tomorrow I'm bringing this and other things to my doctor's attention and hopefully something will be done to lessen at least one of these problems...we'll see...

Any ways... I wanted to bring this condition to your attention as another possible reason you are having "painful period" problems.

Take Care, Stacey :o)

 

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