Fibromyalgia Community

First i would like to say welcome and am glad you found us.. sorry you are hruting both physically and emotionally..

I recommend that you look over to the right side of this board --under TIPS -- you will see a post called....

FM TIPS -- LIVING WITH FM -- TOOLBOX Welcome....

Read all of that and you will have so many new ideas to learn from .... it is alot t read but worth the time...

Again...welcome and happy reading...

Hugs.........Linda

Hi Orchid,
I'm so sorry about all that you are going through! I'm 27 and I've had fibro since I was little. It is so hard when people just don't know how to take your fibro especially since you look healthy! People just don't expect twenty somethings to be going through so much. Yoga helps me so much too and Lyrica was a total godsend in terms of medication for me. I learned that I do so much better if I cut out the caffiene entirely- hard to do but I am so much better than before. Don't beat yourself up though about not being able to do what you once did- I mean, easier said than done thought since I still do it way too much. But, really, it isn't your fault! I think the thing that helped me the most was realizing coping was really about finding a new way to live. I cut out caffiene, changed my diet, changed exercise routines, started taking valerian root so I could get rem sleep, just enjoying little things in a different way- I mean, instead of staying up late and pushing myself, I've realized the cost isn't worth whatever fun but there are definitely things I can do that I love just a little different that don't take so much out of me. Treatment really is more than the sum of all the parts and doing a bunch of little things can really add up to getting some real relief in a sustainable way. I'm trying to adjust stuff now since I'm having a bad flare up and it is hard- don't think it will ever be easy but it is doable. I actually started writing about it some in my blog and that helps me too because for whatever reason, just saying it seems to make me feel better and that things are more in control, at least for me emotionally. I hope you feel better soon!

-Olivia Grace
adventuresofaneverydaygirl.blogspot.com

Hi Orchid,

I'm glad you found the board, so sorry you have to be here. I hope you do find some comfort in hearing from other's who do truly understand what you are dealing with.

First off, you can live a full life while having fibro. It's important for you to have a doctor you trust who is willing to work with you. We often have weird reactions to various meds, and it's a trial and error period to find a good combination.

For me, I need an anti-depressant (the chemical reactions in our brains are compromised, with lowered serotonin, dopamine and norephinephrine, which is what causes the pain and anti-depressant meds help our brains produce these chemicals. It's not just that you are depressed, it's the chemical nature of things. Although personally, I am depressed too!)

I also need a muscle relaxant at night to help me sleep comfortably, some sort of sleep medication (I use melatonin which you can get at any drug store, prescription sleep meds make me crazy), and an anti-seizure med (Lyrica or Neurontin are often used, they help confuse the pain signal as it travels to the brain, reducing the perception of pain). Then many of us need some sort of pain medication.

Also, it's important to have good supplements in your diet. I take a good multi-vitamin, a D3 supplement, a B complex and magnesium. These all help the processes in our body which are compromised.

Exercise is helpful too. Not aerobics or lifting weights though! Pace!! I use warm water stretching with some running or walking in the pool too. If I can't get to the pool, i walk on my treadmill, usually in 10 minute increments, 2-4 times a day.

Educate yourself on fibro. It's important to understand what you are dealing with. Surround yourself with people who are understanding. Sadly, having a chronic illness does test relationships, but really, do you want someone around who runs at the first sign of trouble?

Consider seeing a therapist. Not because this is in your head, but because the right therapist can help you accept this illness and help you move forward with it. You will be angry, depressed, sad, over this diagnosis and knowing it will be a part of your life forever (barring a cure, which we certainly pray for!). However, once you can accept it as what it is, it will help you move forward.

Mostly, be gentle on yourself. You did NOT do this to yourself, you are the victim of a rotten illness. But I promise you can live a good life. I've had fibro for 32 years now. Some days are challenging, but I refuse to not do something I want because of fibro. And honestly, through fibro I have made my best friends, done things I never would have had the opportunity to do and each day brings a new adventure. You will find your ways to move forward, just be gentle on yourself and your expectations of yourself!!!

Hello and welcome.....MiMi in NC....sorry you have met the wrath of the dragon too.....but I am glad you have found this unique support group....you will find a lot of good "tools and tips" here.....be sure and look at the posts under the Tips and Resources to the right of this page....especially the member toolbox and the nutrition and vitmains.....the member toolbox offers some good tools and tips that our own members have tried and found to help them cope better with FM pain...

I would also encourage you to ask your doctor to check your Vitamin D level, if you have not already done so....this is so very important....low VItamin D can cause some of us FMers additional pain....and is common for a lot of us...it is a simple blood test...but you MUST ASK your doctor to run it....it is not included iyet in the things that doctors normally check for...

I am sure that you will eventually find something that will also help you....I am not sure that you will feel "normal" again....as once we get FM...it never goes away....I have learned how to "control my FM pain" by taking vitamins and supplements....I take magnesium and malate, Vitamin D supplement, Omegas, Super B Complex and Calcium...plus others as I also have multiple health issues....

What helps one may or may not help another....only you will know when something helps you....it takes a trial and error process though....to find exactly what your body needs....and this takes time and effort....you must allow at least 6-8 weeks for anything you take to get the full potential of it and to "feel" a difference....before you decide if what you are doing is helping you....

I hope you will post often, ask questions, make comments or suggestions....hang in here with us....and I am sure that you will learn a lot about things that will help you cope....

Take care and good luck...


MiMi

Welcome! You've already gotten some great tips.

Ask your doctor to change the Lyrica to Gabapentin. Gaba is the generic of Neurotin. Neurontin is an earlier version of Lyica that works much the same way. Many people find they tolerate Gaba better too. And best of all, since it's generic it is very inexpensive.

If you haven't already, get an FMLA form on file at work ASAP. It protects your job for up to 12 weeks a year when you need off for medical reasons.

You may have to consider if remaining in this job is feasible. Look at all your options. Can you decrease your hours, work half shifts or job share? Is there another position within the company that may be more flexible? Consider everything.

Thank you to all of you for your responses. It means so much just to talk to people who have been through the same thing and I appreciate all your advice. I realize it will take some time to accept this illness as well as find the ways that work best for me to manage it and cope with it. It's such hard work just to stay on top of managing it, I guess I just get tired of being so strong. But as fellow FMers I'm sure you know all about feeling tired. I am glad I found this board and I hope it will be a resource that truly helps me get through this, day by day.

Dear Orchid:
I am so sorry to hear all that you have gone through! It reminds me how lucky I am to have a supportive spouse--better you learned your boyfriend's true colors now than later! Even with Fibro, you'll find someone who loves you and enjoys taking care of you as a show of his affection for you.
In terms of dealing with the pain, I would recommend you get an appointment with a pain management specialist, neurologist or rheumatologist ASAP to get you on a better pain management plan. Lyrica does work, but most of us need to take other pain management meds on top of that. Let me know if you'd like some ideas of how to find a Fibro-friendly doctor, if you haven't already.
Hang in there: the first few months after my first flare and subsequent diagnosis was the hardest. Allow yourself as much time to rest as you possibly can and try to do relaxing things that you enjoy--watch your favorite movie, talk with a friend, or, of course, visit us all on the internet!
I am 29 so I know how doubly hard it is for us younger Fibromites--many people think this is a condition that only affects women middle aged and older.
Let me know if there is any info I can give you or anything else I can do to help!

I'd like to address the Lyrica cost issue. Have you looked into some prescription aid programs or contacted the pharmaceutical company? Also there is a website www.pparx.org This might help. Best of luck to you!

Hi all. This is my first time on any message board of any kind and I am not sure about doing this. But having Fibro. has made me do alot of things I have never done before. First, I am sorry for anyone who is reading this because that means that you are one of us. I am 58, male with a load of medical problems, but working hard to live a good life. I read Orchid_918 and felt compelled to write this note of hope.
Everyone has given you wonderful input and the more information you have will help you move forward. I would like to just add a few of the things that have helped me.
1. Found a way to love the "new" me, with all my heart.
2. I put improving my health first above everything else.
3. Educated anyone of my family or friends that wanted to understand the new me.
4. Let the other people go.
5. Had my doctor run blood work on anything I found reading about fibro. that might help me.
6. Get 20 minutes outside in the sunshine to help with the depression.
7. Surround myself with positive people.
8. I find pray helps me.
9. Give the people I love the understanding they may not be giving me. Most people are afraid of what they don't understand and they don't understand fibro.
10. Last, remember you and I are not alone.
Hope and love to all for a better tomorrow.

Hello Orchid Girl,

I can relate totally! The pain is worse than child-birth. I was diagnosed about 12 years ago, but i was in pain for years before they discovered what was wrong. i have tried so many drugs, and yes Lyrica was one of them. I did not take it for too long since I started gaining weight from the first pill. I am currently kinda stable as far as the pain goes, but i take 5 different anti-inflamatory pills every day. I also use biofreeze rub and I also got a TENS unit from my doctor that helps when the pain is really bad.
As far as work goes, I use FMLA time so that I will not lose my job. This is an act that was put in place by the Clinton administration in 1992. It secures your job for 12 weeks in the event you have a chronic illness or you need to care for a family member who is gravely ill. Ofcourse you have to have your doctors documentation to backup your claim. If not for FMLA I would have lost my job a long time ago. The bad thing is when i use FMLA time I do not get paid. But you might want to sign up for it if you are afraid of losing you job. Is there any local FM group in your area?

Hi- i'm so glad you found us, this site helps me so much!!
I am 27 yrs old and have been struggling with FMS symptoms since i was little also. I am currently on Gabapentin (mentioned earlier). It seems to help mostly for sleep but it doesn't kick in until 3 or 4 hrs later so i have to take it in the afternoon.
I used to take Lyrica for a few months and that didn't help at all- the side effects weren't worth it.

I feel for you with breaking up with your b/f because of it. I too struggle with my current b/f with the same issues- i fear it's ruining our relationship as well. I hope you can get some good tips and helpful ideas from here!!

Soft hugs!
Alicia

Hello Orchid,

You've obviously dialed in to a live audience of willing friends! First, we certainly all welcome you. And, secondly, we all share all some of your woe. Yes, we are so much alike, yet have our own individual curiosities. It looks like you've been given some really good advice. While reading all your responses, I took some notes to comment on, and even wrote down some information that helped me (not that I'm an expert).

I learned from my rheumatologist that when you have a low Vit. D level in your blood, it indicates your bones need additional calcium and magnesium. He even stated that when your bones aren't supporting themselves as they should, they lean some on your muscles - causing your muscles to work over-time, thus causing exhaustion, and even effects your mood...which can promote depression from not feeling well. I'm on a prescription Vit D medicine, and take an additional supplement. Also, taking a good multi-vitamin from a vitamin store. I know money is a factor. I can across a very reasonable website: www.BotanicChoice.com5Dollar - I hope it helps.

FMLA (Family Medical Leave Act) is useful in helping to hang on to your job. Actually, you can get paid if you have time built up at work. When your 12 weeks of job-protected FMLA runs out, then you have to sign up for (unpaid) General Medical Leave. Once signed up with FMLA, you should be assigned a case manager who will guide you on how it works. I hope it works out for you!

Living-wise/money-wise, can you move back home or with an understanding relative? Can you get or become a roommate?

Medicine-wise, for my terribly decreased energy level, Adderall Xr 30mg (once a day) has REALLY helped me get up and going! Pain-wise (yuck), I take Gabapentin and Tramadol (which I'm real tired of) and Cymbalta, and (for the first time in my life, an anti-depressant) Pristiq. I tried Lyica and I gained like 30 pounds in a few months.

Speaking of the saying, "It never goes away..." I've actually heard one individual, and two third-party individuals actually say they "USED" to have fibro and it went away. I actually had it several years, off and on, before I got to where I could barely function in my job, and was finally diagnosed. Long ago, my symptoms were my bones hurting, like I had the flu, and I felt real weak. I have noticed throughout life, that these symptoms seemed to emerge when stress was the highest in my life! Just as they were when I finally got diagnosed - while working under very demanding, stressful conditions.

Self-educate as much as you can. It does help to get out, even if it knocks you out the day after. You need the emotional pickup! If you attend church services, ask your pastor and friends to pray for you, and read your Bible for strength and healing: mind, body, and spirit.

Think positive thoughts. Quote healing scripture, and believe your healing is coming!

I hope and pray the very best for you, and all of us in this tiny community of hope and support.

JL

Hi I have been in your shoes for a year! I am back to work and have finally got relief from my FM. I tried PT which barley helped and was expensive. What finally has helped me is Yoga, and Zoloft! You wouldnt think Zoloft would help but OMG I am finally getting pain free! Lyrica did not work for me and I felt drunk. I have tried EVERYTHING and this has been my only relief. I take the generic so it is very cheap. Might want to try it, it works better and is cheaper than Lyrica. Not to mention safer.

It is a difficult condition to live with, I have had it for years. My doctor has been doing the trial & error system of trying to find medications to help for years. I also do not have insurance, so it does get VERY expensive. Many of the medications had horrible side effects (they even tried an epilepsy med that made the capillaries in my eyes burst, I looked like a blood red zombie for a month) Some of the meds have such dangerous side effects (gee, like death, stroke & heart problems) that I couldn't see that they were a better option than the pain. What got me the most was the exhaustion. Feeling so tired all the time that everything is a chore. I actually had days where I would go to get the mail and get so exhausted on the way back that I would lay down on the driveway to rest. Not a way to live. I decided to be proactive. I developed a yoga and pilates program which helps very much. Stretching helps to break the pain cycle. Walking is also helpful, or an elliptical machine. I have a very hard time sleeping, and other than sleeping pills, which leave you groggy the next day, or totally out there. Ambien does help sleep, but I would wake up and eat and not even remember doing it. Couldn't figure out why I was gaining so much weight. One night I actually went to the barn and rode a horse, next morning did not remember a thing. My husband thought I was awake. Eat well. I try to eat organic as much as possible. Avoid chemical additives & processed food. If the budget is tight, try a container garden. Avoid things like hot dogs & bologna & get a good multivitamin. A high dose b complex supplement can also help the nerves. Fibro can be very hard on relationships. My husband tends to think that I only do things that I 'don't want to' do. He totally misses the point that I am also unable to do many of the things that I used to enjoy doing. Since he can't 'see' the problem, it must be 'all in my head'. His idea of being helpful is to tell me to 'put it out of my mind and just not think about it'. Honestly, there have been times when I have wanted to smack him in the head with a frying pan and say 'gee honey, it doesn't really hurt, it's all in your head'. I tried brining him to my doctor and having the doctor explain to him that fibromyalgia is a real condition and the pain is very real. Didn't seem to sink in. Don't let it get to you. Boyfriends, husbands, family & friends may or may not be understanding and supportive. Regardless, do what you need to do to take care of yourself. Often people can not understand chronic pain unless they have experienced it themselves. My fibro was actually trauma induced after being hit by a drunk driver doing almost 100. Between the fibro & all the back surgery, it has been a challenge, but life is a gift, and each day we are given the chance to make the most of it. You can still enjoy your life. Some days will be difficult, but hopefully you will start to have more and more 'good' days.