New to the forum?

Sign Up Here!


Already a member?
Please login below.





Forgot your password?
Need Help?  
Recently diagnosed/21/F and discouraged!!
29 Replies
FibroInParadise - May 26

Hello all

I am just beginning to come to grips with my diagnosis. I have moderate FMS... Most troubling symptoms are fatigue, joint and muscle pain, and all the emotions that come with them. My shoulders and neck especially, along with my quads ... Are constantly aching... You guys know how it goes!

I've gained weight over the past 2 years whilst fighting these symptoms which were only diagnosed Monday. I was prescribed lyrica and I'm deathly afraid of gaining more weight as I am already 20 lbs over my ideal. Im as active as my fatigue permits. Exercise and eat very clean.

I'm also frustrated that almost everything I see about FMS seems to have pics of women in their 60s!


I feel alone and too young and stressed about all this. None of my peers seem to even begin to relate.


I'm just looking for someone to be a friend. Who gets it. I'm mourning because I want my "old" life back...I have no kids, I work and am in school. And there's so much that I want to do that I'm too goddamn tired to do. Or in too much pain. Walking up the stairs in my apt is a chore in and of itself.

I almost never complain outwardly. This is my only avenue to vent. & I have very very little family support.


Anyone out there?


Thanks to you all [3

 

January - May 27

Fibro in Paradise -- nice tag! Sorry to welcome you to the Club - but this website is a nice club. : ) It really is an adjustment to learn you have a chronic illness - but please keep trying to help yourself feel better. The more you learn, the better - you might find things that work for you. And it's OK to come on here 24/7 and vent. Sometimes that really helps!

Everyone I know who takes Lyrica has gained weight, plus side effects. I think, according to others on here, it's best to ease into the Lyrica very, very slowly and keep the dose low. Please read the forums about other people's experiences with the fibro drugs. Some people do well - but some people have a bad time with them. If Lyrica is not something you tolerate well, ask to try something else. There are lots of different drugs out there. Make sure you communicate with your dr. And educate yourself by googling the drugs you are taking and reading up. Sometimes you think you feel bad, but it's really a side effect.

I think FMS is a big bag you get thrown into sometimes, just because you have pain and the dr. doesn't have time to carefully diagnose - it's easier to write a prescription. Were you tested for other diseases to rule them out? There are many conditions that have symptoms similar to FMS, from food allergies to Lyme disease to sleep disorder to unusual diseases.

A lot of what you see about FMS - if you are talking about TV ads - is not exactly accurate! I always have to laugh because they are all so model-slender, well groomed, energetic - laughing and having such a great time - walking with the kids, doing art class… haha. I don't know anyone with FMS who looks like that.

I think the definition of fibromyalgia has expanded a lot in the last decade - it used to be mainly older people with aches and pains, and FMS was classified as an arthritic or rheumatic disease. I read the drug companies are pushing hard to open up the markets - and FMS is now viewed by many drs. as a depressive disease - and they are taught that we hurt because we are depressed. I'd suggest you google and read a lot. Google "viral causes of fibromyalgia" just for starters. Educate yourself, because drs. aren't always aware of all the possible causes of this disease (which may include many different forms of disease) - or about the treatments. There's interesting information at a website called CFS central. Sometimes the fatigue is caused by a viral infection.

It's amazing to me that so many very young people are now being diagnosed with this disease -- which is what makes me wonder if it is some kind of infectious disease. It is odd that people at 20 would hurt as badly as those in their 60s.

At any rate, please don't give up. Best thing you can do is read a lot from many different places. Try different things. I do believe there are ways to make yourself feel better! Gluten free diet helped my fibro pain significantly. Fatigue has been helped in the past by antibiotics or antivirals. I take lots of different supplements to help with energy, but I carefully researched and tried each one to see what worked for me. The main thing to remember is that we all have different body chemistries, and it's very important to find what is going to help you out the most. There are many good ideas on this site from different people. Hope you have a doctor who will spend time working closely with you - and hope you feel better soon. For most of us the main things to treat are sleep, pain and energy level - but there are all sorts of other conditions that seem to crop up, maybe because we are genetically different - or maybe our immune systems are not working right. Hope we get better research on this disease! Take care.

 

Pikespeak - May 27

Hi there! My daughter is 29 now, but was diagnosed with FMS at 20 after a car accident. She has put FMS in the "ignore file" and became a nurse last December. Not everyone can do that, but she is choosing to ignore her pain/tiredness. I was diagnosed last summer, but feel there were signs along the way that pointed to FMS. Lyrica worked well for me for a while, but did gain weight and had problems with my short-term memory. Read my posts about Savella. It is in the same "family" as Lyrica, with less side-effects for me. You will see that we are all unique in how FMS affects us.

 

Amador - May 27

Hi! You're not alone with it, I'm 27 now and I was 20 when it started. I'm a male which shows that you can get this condition being any sex, at any age. The advice I can give you is:

-You'll need the family support as you go along the way, so it's helpful to have at least one person to talk to and who beleives you. In my opinion you can't carry such a burden alone, so it's better to complain/tell your frustration rather than keeping it in.

-Find a good neurologist, or a doctor who knows this condition thoroughly. The first help I got was from a doctor who diagnosed it and found an anti-depressant (Cymbalta) which eliminated the pain/tiredness mostly. Different drugs work for different people, but one of them will definitely work!

-Research and read about the condition yourself, that's the only way I was able to solve it eventually. A gluten-free diet eliminated almost all of my pain, but it took years for me to find this, I should have started my own research much earlier. Now I'm using vitamins, gluten-free diet and streching exercises, and I'm happy to say I got rid from almost all of the pain.

-Don't mourn your "old" life, it won't come back by itself, only you can get it back mosly by working hard on finding a solution. I'm not even sure you can get 100% free of this, but I did manage to get to 80-90% eventually, I'm almost as good know than pre-fibro.

 

kvc33 - May 27

Although you may not know them personally, there are lots of people your age with fibro. They may be suffering in silence just as you are. Don't learn the lessons that we have had to learn the hard way. You must pace yourself and never push because it will make you worse. Get tested for food allergies right away. Most people who recover from FM had to drastically change their diet. You can be sensitive to all kinds of 'healthy' foods. My bf can not have fruit because his is fructose intolerant. Most of us find that a gluten-free diet is most helpful. That means no grains that contain gluten such as wheat, barley and rye. No foods that contain gluten either. Your life has only just begun. You have plenty of time to do the things you want to do in life. I assume that working and going to school are two of them so you are already doing that. I haven't been able to work or have a social life for 17 years so you are way ahead of me. I have severe exhaustion, something you don't have, (yes, I understand that compared to how you usually feel you are very fatigued). Exercise won't keep the weight off so don't try to do it that way. If you can, stay away from meds. Try Curamin, which is made from the natural spice tumeric. It helps with pain control. You can also try massage, gentle stretching and basic yoga.

 

FibroInParadise - May 27

Thank you EVERYONE who has commented so far.

Just to answer a few questions and clarify:

I've been tested for a plethora of things, and the doc discovered 16 of the 18 points to be extremely tender.

I've already been diagnosed (previously) with Interstitial Cystitis, Endometriosis , and have an Inter Stim modulator installed for chronic pelvic floor pain and spasms.

I am deathly afraid of gaining more weight on the Lyrica - I'm only taking 75 mg a day until my follow up on the 7th of June. It's not making much difference at this point. I still feel like, for lack of better words -- like I've been BEATEN with phonebooks.

On the 7th I will have the results of duodenum and stomach biopsies, along with blood tests that were done to check the motherload of things once again, including my cortisol levels.

I'm already on the maximum dose of fluoxetine (Prozac) and have been for several years - hence the doc not prescribing additional antidepressants.


Honestly, I'm not trying to be a whiny little kid - I've endured a lot in my 21 years and welcome the idea of someone being able to relate. I'm tired of being told I'm crazy - or I'm a f'ing hypochondriac! I HATE that term. I can count on one hand the last time I woke up feeling rested over a period of 3 years..

If someone would be willing to buddy up with me I would love it... As I said, my family is not really behind me - I've lived on my own since I was 17.

Is there something I can take to offset the potential weight gain? I dropped my daily calorie intake earlier this year, from an average 1800, to 1600, then 1500, all the way down to 1200 which I now understand probably made me catabolic.

No weight loss at all. So now taking a drug that will probably make me gain more weight just makes me feel even worse. And because I'm not obese, I feel like my doctor could care less. He's like, well, you're still at a decent weight. But I'm 21 ! I eat right - I exercise. And I've gained 20 odd pounds in the past 2-3 years. I retain water like crazy.

And my hair is falling out.


My GP and my internal med specialist both say my thyroid levels are normal.

mamma mia - today I felt like crying about it to be honest.

I know there are others out there who have it SO MUCH worse than me.

I just don't want to regress so to speak. I'd like to maintain a decent quality of life. I'm willing to do whatever I have to...

THANK YOU again EVERYONE!

FibroInParadise xx

 

Cher0208 - May 28

Hi FibroInParadise,

I know how you feel. I am 26 and my symptoms, for the most part began last year. It started out as pain in my legs. I remember the DAY the leg pain started and after a few days, I thought - this is weird, I haven't worked out. Fatigue, I have had ever since I was a child. My vision began changing over two years ago. I have blurriness that comes and goes. I now believe I have had a gluten sensitivity my whole life. I ate tons of it and when I became a vegetarian over two years ago - that was the straw that broke the camel's back. I ate all gluten foods, all processed and packaged foods and hardly anything fresh or organic. I had my coffee, light and sweet almost everyday. I now eat meat. Grass fed and with no hormones. Organic veggies and fruit when we can afford it. Little things help like seasoning with turmeric because it helps inflammation, or eating raw garlic daily because it's anti viral, drinking a little organic apple cider vinegar everyday because it alkalizes your blood and helps fight infections, drinking plain hot water with lemon because the hot water is soothing to the digestive system and the lemon is amazing for so many reasons, cooking with coconut oil. You must look up the benefits of coconut oil!

But the pain is what gradually went from annoying to severe. Then the numbness and tingling in my extremities. My torso and thighs felt like they were on fire. My stool became very loose and stayed that way for months, which meant I wasn't absorbing any nutrients. I began to have very disruptive sleep where I'd wake up in the morning and felt like I had never gone to sleep. I had no health insurance and was terrified. Terrified is an understatement.

I too, don't have any support from family and was living with my so called best friend at the time. I had to get an extra job, I was working 6 days a week on my feet in 2 hair salons trying to pay for overly expensive health insurance and rent. Just to be told by a rheumatologist, 2 neurologists, and many internists that nothing was wrong and I should take antidepressants. I cried myself to sleep at night and in the bathroom at work.

Finally, I found a anesthesiologist who was also a pain management doctor. Her method was to treat holistically when she could and sometimes would prescribe drugs. First thing she did was test my cortisol levels. That was ok. She tested me for Epstein Barr and it came back very high. I looked that up and it made sense. I had all of the symptoms. I did massive research. And also began seeing a nutritionist who did muscle response testing on me. He gave me many supplements and over time I began to feel tremendously better.

For the longest time I "mourned" my old life too. I just wanted ALLLLLLLL of these torturous symptoms to go the f*ck away. I want to go out with my friends, the few that I have and have a few drinks on the weekend. I want to eat gluten and sugar and be fine like they all seem to me. And I just cannot do that. I have come to terms, and you will too that your body will never be the same. I DO NOT mean we can't heal whatever needs healing. I am a strong believer in healing but I know I cannot ever treat my body like shit again and expect there to be no immediate consequences.

So for me, eating gluten and sugar fee is what makes me feel great. I do my very best to avoid processed foods. And I try different supplements. (Omega 3's are essential, in my opinion, for the inflammation) I drink tons of water. And am working on how to deal with stress management.

A year ago I was a complete victim, scared out of my mind. So scared that I don't think I have much fear left in me. For someone who has had fear issues since birth I am a tough b**** now. I look at life a lot differently. And all the petty dramas of other peoples lives as well as mine doesn't touch me. I feel so in control now. Even though I am still suffering with my symptoms because I stupidly started drinking again and eating whatever I want. I know what I have to do and if I don't do it, then I cannot complain or cry because its my fault.


I also believe, like January said, that Fibro is what they call it when they can't figure it out in your first 20 minute visit with the doctor. The term Fibromyalgia doesn't mean shit. You HAVE to do your own research and find someone who can help you but YOU will mainly be helping you.

I will finish with two quotes that I love and are getting me through this difficult time.

"Don't wish it were easier, wish you were better. Remember that your obstacles, crises and setbacks are your greatest assets. It is through overcoming these that you become stronger, wiser, better. Emerson said "When man sits on the cushions of comfort he goes to sleep, but when he sits on the needles of adversity he rises up to do great things." -Dr. Joe M. Elrod
(JOE M. ELROD WROTE A BOOK CALLED REVERSING FIBROMYALGIA WHICH IS PHENOMENAL - HIGHLY RECOMMEND IT)

“The Gods we worship write their names on our faces; be sure of that. A person will worship something, have no doubt about that. We may think our tribute is paid in secret in the dark recesses of our hearts, but it will out. That which dominates our imaginations and our thoughts will determine our lives, and our character. Therefore, it behooves us to be careful what we worship, for what we are worshiping we are becoming.” ~ Ralph Waldo Emerson

If you ever want to email me to vent or chat, feel free. (That goes for everyone!) Cher0208 at aol dot com.

Best of luck to you. Stay strong! You will get through this. And this will make you stronger!

xoxoxoxo

 

kvc33 - May 28

Do you know why you are retaining water? Is it a side effect of one of your meds? Please don't starve yourself, as you have found out that doesn't get the weight off, in fact your body will hang on to it for dear life if it thinks it is starving. I would imagine your weight gain is due to your meds, but it is common for people with fibro to gain or lose 30 pounds 'without explanation'. Your thyroid should be tested for both T3 and T4 levels, most tests only cover T4. Even if the test comes back normal some people still benefit from thyroid supplements. I would urge you to see a naturopath to help you with your diet and pain control. I have observed that people who have food allergies lose weight when they stop eating foods that they are sensitive too. I hope you didn't think that I thought you were whining just because others have it worse. I find that it helps to bolster my spirits to be grateful for what I can still do that others can not so I recommend that to anyone who is still breathing! I fully understand that you want to be as healthy as possible and engaged in life. That is a positive thing! Believe me dear, fibro is hard no matter what a person's age. It can be torturous for a woman who is trying to raise children. You must get your stress level down as that will make things worse. Learn some deep breathing and relaxation techniques. Count your blessing and learn what you can. Trust that things will improve and take the good advice from the people here. Take care!

 

FibroInParadise - May 28

Everyone - thanks again. For those who offered encouragement and advice - please understand how much this means to me. I feel as though I'm able to just day exactly how I feel here as opposed to constantly keeping a brave face every day.

For all of you who have posted suggestions for tests and things to ask my doctors. THANK YOU. I have written everything down.

Each and every one of you is fighting a battle but you choose to help others in spite of that - you are all gems.

Does anyone know of any 5k races (walks) for the cure? I'd love to participate.

Thank you all again xx

 

Fantod - May 28

Fibromyalgia Awareness Day is May 12th. Unfortunately, most of us could not do a 5K walk or much else for a cure. And, a lot of us are saddled with family members and friends who don't get it and would not walk for us.

Lyrica is notorious for rapid weight gain and water retention. It does not affect everyone that way, but doctors should be more proactive when the problem becomes apparent.

I think that they get fed up (and we're not!!??) with what they perceive to be unfixable patients, throw the first thing that they think of at said patient and move on. Hence the need to be your own best advocate and not put up with any crap. They are your employee and can be fired. I find writing a follow up letter to my insurance company helpful too. It gives me closure and them some explaining to do. And, you may save the next FMS patient who wanders into their office a lot of the same trouble.

Order "Fibromyalgia for Dummies" from Amazon. It is a pretty good book and will give you the basics of this syndrome. The more you understand about this syndrome, the more liberated you will feel.

I find that being grateful for anything that I can accomplish as opposed to the things I can no longer manage helps a lot. It gets me through the day. You are not a whiny little kid. There is nothing wrong with wanting some quality of life especially at your age.

I hope that you can get your doctors to really listen to you and that some of the suggestions we've made are helpful. Take care.

 

FibroInParadise - May 28

Hi Fantod - you're absolutely right about the 5k. I guess I was just hoping that there was some sort of event that made the public more aware.... For selfish reasons I suppose, because I want people like us to be treated with respect! For people to know that this IS real.

And I guess because I want to push myself toward a physical goal.... I know it would be crazy hard but I feel as though I have to do something so that I don't allow myself to become sedentary. It's a stretch for sure- but not even 5 years ago I was playing center for my high school field hockey team, running cross country, showjumping in horse shows.

Now a flight of stairs can leave tears in my eyes.


Maybe I need a reality check. I know I'm not going to be this star athlete. But practicing for something that might help us find a cure to beat this would be truly inspiring.

I'm sorry for rambling - these are kind of just random thoughts on the matter. Thanks for listening (heart)

 

Fantod - May 28

Hi again - I just want to really caution you about overdoing it in the exercise department. One day of reckless abandon will lead to a week and possibly more of being able to do nothing. FMS patients, especially newbies, really underestimate the effect that this syndrome can have on our poor bodies.

If you want to get some exercise, try Tai Chi or (and I kid you not)a water areobics class for arthitics. Tai Chi is particularly good as it has meditative qualities which is good for stress in addition to the exercise. You could even get a beginners DVD and try it at home.

I admire your ambition and don't mean to discourage you. It is clear that you are really struggling with this whole scenario. Find your niche and have at it. Just be sure to listen to what your body is telling you and don't try to push through fatigue or pain. Paybacks are hell.
Take care and enjoy the rest of the weekend.

 

FibroInParadise - May 28

Hey there. Thank you - I just feel so out of control when it comes to my fitness and my weight. Wanting to be active again... I know I have to kiss martial arts goodbye. But yes, I AM struggling. With my diagnosis, with the pain every day... Feeling alone etc.

I am the queen of overdoing it. I just need to relearn things.


Thank you so much for being patient.

 

Pikespeak - May 29

At 57, I can walk a 5k in one hour, which is a pretty good pace. Although I never have had a flare afterwards, I have decided to do the slow-and-steady 30 min. walk when it is cool outside, and on the days I feel the best. If I have lots of yardwork or housework, I generally save my energy for those tasks. Feldenkrais class is very helpful too!

 

cowboy - May 30

Hi,

I just wanted to add a quick comment. Though I'm sure I am the exception, I take the highest dose of Lyrica allowed and haven't gained a single pound in three years. Also, I took Savella and after two months started having terrible panic attacks. So, like someone here said, everybody's body chemistry is different, so hopefully you have a doctor who will work with you to get it right.

One more thing, hang in there. The nice people here will be there for you.

 

FibroInParadise - May 30

Thank you all again for the encouragement and reassurance. As well as the priceless advice.

Has anyone here dealt with unexplained hair loss as a part of FMS or something related?

 

Fantod - May 30

Hair loss has come up before in discussion and a lot of us have problems with it. Fingernails becoming weak, brittle etc too. I have a thick head of hair to begin with so although I have noticed more hair loss it doesn't affect me too much. Even though your thryoid tests are coming up OK according to the rheumy, you might want to see and an endocronologist for another evaluation. I think that my problems with hair and nails are also tied to medication use. take care.

 

Message:


You must log in to reply.

Are you New to the forum? Sign Up Here! Already a member? Please login below.

Forgot your password?
Need Help?
Ask a Question