Fibromyalgia

MOST HELPFUL POSTS

Dawn - posted on 01/02/2009

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I started taking Cymbalta about 18 months ago for the chronic pain relief it offers people like us. It has helped immensely because it does not cause any flares of my lupus like some of the other Fibro meds do... I also notice I have been able to stay calmer and have less depression when the flares get worse than I used to.

Christ - posted on 12/14/2008

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I was introduced to a product by my mother, an RN when I was diagnosis with Fibromyalgia. My mother is very skeptical of everything but swears by this product. She heard of it from my grandparents.. My Grandparents both swear by Monavie-they have been drinking it for 3 years and are in their 90's!!!! My joint pain is virtually gone and the change in my sleep pattern has changed my life back. This product is amazing and all natural and I know everyday I am getting at least 5 servings of fruits and vegetables in the morning breakfast shot and not all the calories and sugar from the smoothies I was drinking. I have even lost weight during this time!!!

Among the reported benefits/features of this deep purple berry are: High levels of dietary fiber

High levels of essential amino acids and trace minerals - High levels of plant sterols

Essential fatty acids ratio that resembles olive oil - Protein profile similar to eggs

Very low sugar content - High levels of antioxidants

Taking 2 ounces of Monavie in the AM and 2 ounces in the early evening ensure that I am getting 10 t0 13 servings of fruits a day with the highest antioxidants found in any food! For only about 100 calories . It is a no brainer- easy, gives me tons of energy, The glucosamaine in this liquid form does wonder for my joints and I naturally sleep better, my skin glows and I know I have given my body what it needs. It sure takes the stress and guess work out of eating right. And it is not a drug it is a Superfood so it doesn't need clearance or tampering from the FDA or anyone! It is simply life and health made simple for a change!!!!

For any info- www.Monavie-losangeles.com go to timing and watch the discovering video

I will be glad to help anyone interested in trying it for their joint pain and energy.

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Michele - posted on 12/29/2011

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I have it, too! It is tough. You sometimes have good days, and then people forget why the next day (or even the next hour) that you are limping, lying down, or in a lot of pain. It is not easy for the family or even the kids to understand.

User - posted on 05/02/2011

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I took klonopin, topomax, and savella before i became pregnant with my third. now i'm on nothing, and feel awful. i highly discourage taking narcotics such as vicoden, i was put on that after my second was born, and your body gets used to the medication, and needs a higher dose all the time. these three meds worked really well for me.i'm an R.N, and the side effects are minimal. i have given, and recieved alot of medications. i really do not recommend cymbalta or lyrica, they cause weight gain and swelling, amongst other things. hope this helps1

User - posted on 05/02/2011

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I'll have to try that monavie drink, i'm pregnant with my third, normally my symptoms are better during pregnancy, but this time they are worse.

User - posted on 05/02/2011

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I'll have to try that monavie drink, i'm pregnant with my third, normally my symptoms are better during pregnancy, but this time they are worse.

User - posted on 05/02/2011

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I'll have to try that monavie drink, i'm pregnant with my third, normally my symptoms are better during pregnancy, but this time they are worse.

Caren - posted on 01/31/2009

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Hi everyone, I am new here (obviously :-)
My name is Caren and I was just diagnosed with fibromyalgia about 2 months ago, but I have had a feeling about it for awhile. I am wondering if seeing a rheumetologist is required? My Dr basically ruled out everything else through blood work but I am pretty sure that's what it is.
My friend has had it for a long time and I admit at first I was resistant to her "weird" complaints. But I was healthy and active then. About 3 years ago, the pain started and I began to suspect. A year ago it got pretty bad, but I kept popping Aleve. I have had fatigue, depression and sleep problems for at least 3 years.
I am a SAHM with 4 kids here and a daughter who passed as a baby. My kids are aged 5-22.
I don't think my husband quite understands yet. He thinks it is just aging and weight. I have gained weight with each of my children but I had always been active and able to be somewhat in control. Now I am caught in the vicious cycle of depression breeds fatigue breeds inactivity breeds weight gain breeds depression! It is incredibly frustrating as you all know!
I have been taking Cymbalta for 3 weeks and haven't had any negative effects yet. I also take Monavie, but until recently it was pretty sporadic.
Anyway, thanks for listening...I am so glad to have found this site and look forward to hanging out often!
Caren

Dawn - posted on 01/30/2009

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Dawn Stevens... Welcome!

My name is Dawn too... seems to be several of us on this list:)

What do you do to help manage the FM symptoms if not on pain meds. I only take the cymbalta and Ibuprofen for mine, but others need stronger pain meds to manage their pain.

I have a higher than normal pain tolerance so I think I am lucky on some ways. What is only uncomfortable for me would be intolerable if I had normal pain tolerance my docs tell me. So for those who have normal pain I cannot imagine being able to tolerate the pain. Some days my pain is so awful ( like today) I do not want to do anything, but I am trying to ready my house to sell it so have to get more things packed away... no painting today though since the brush would only fall out of my hand and my back and neck are killing me already!

Dawn - posted on 01/29/2009

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Hello all,

Well here is a bit about me, I am 28, was diagnosed with FM when I was 21 but have suffered pain for as long as I can remember (not long some days lol) I have a 27 month old boy called Connor and am 13 weeks pregnant again with "peanut" number 2, my FM seems to subside while I am pregnant, I get the usual pregnancy aches and pains but they are nothing compared to the FM pains. I live in Spain and have done for 5 years but am originally from the UK. I do not take any pain meds for my FM (the docs over here and in the UK don't believe in medicating FM) and am still working full time in a call center.

I am looking forward to heaing from you all.

Dr. Peggy - posted on 01/27/2009

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Dear Roxane: Re: Cymbalta = Sheesh, what a horror show for you, especially because you knew you were in for a second row. Glad the Lyrica is working for you. PBB

[deleted account]

I agree that Cymbalta might work for some - heck if not most. UNFORTUNATELY - I was not one of them. I had a side effect that was so rare it didn't make it on the drug informational sheets the pharmacists give you with the prescription. I have since made a report and sent it off to the company.



My unfortunate disaster with Cymbalta only took one pill. I took the med, and an hour or so later I started getting muscle tremors in my face. It was like my teeth was chattering, but it was every muscle in my face. Then it continued to move downward to my neck and shoulders. The tremors were a nuisance, but the unbelievable pain that it caused was the kicker. I could not get it to stop.This lasted intensely for about 1 1/2 hours, then it started to taper off. I then called the pharmacy and they told me to discontinue, and to seek medical attention if it didn't stop. I knew a little about this med due to research before I took it, and I knew if was an approx. 10 to 12 hour half life med (half now, then half  released 5 to 6 hours after taking. Approx. hour 6 after taking the med initially, the whole thing started up all over again. Just as long, and just as painful.



 



I know Cymbalta is the miracle med for FM for most people I talked to. But there is always that one person who it doesn't work with, and that always seems to be me.



I am on Lyrica now and it seems to be working.Cross my fingers it will continue.

Susan - posted on 01/25/2009

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i have fm, i guess i have had it for around 10 years, but i also have a thyroid problem and i dont think that helps either. but for myself i find that when i get really  emotional stressed out that it really flares up. i find also that when the weather is very up and down temputure wise that also doesn't help. i need some help as what can help with dealing with this health issue.

Dr. Peggy - posted on 01/24/2009

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Hi, folks: New here, but not so new to Fibro - dx Sept 2004 after 10 years of being mis-diagnosed with RA for 10 years.



Lots of you are asking for information. My best source has been the National Fibromyalgia Association. It is 501C3 not for profit organization and sponsors research, patient and health care providers awareness and other things to help us.  And my favorite, Fibromyalgia AWARE, a magazine that covers research, traditional and non-traditional treatments, exercise, footwear, diet, people who have FM and people around us, etc., etc..  It is just great.  I think I gave the organization a donation of $35 and got the magazine about once a quarter. I have seen it on a newsstand before, too.  The organization also has a website:  www.fmaware.org  Easy to use. Free. Good information.



When I finally got diagnosed (Please, I just want the pain to go away), I got lucky. My doctor gave me an antidepressant that had worked for his other patients (Me: Antidepressant? Him: Any one who is in pain 24-7 in all four quadrants of her body is bound to depressed, too.) and sent me for physical therapy. Why is this lucky? Fibro is NOT problem of pain – the pain is not caused by some dysfunction of our bodies. The pain is caused because our bodies have more of the receptors for pain in our spines (substance P) and more of our brains get involved when we feel pain than the normals in our world. We feel pain more. Princess and the pea, anyone? Sound familiar? Think about boxers. They don’t feel pain like the rest of the world. We FM folks are at the other end. We feel more pain for the same amount of stimulus. The 24-7 pain comes from lack of sleep and deep muscle tension (from being in pain). So treating just the pain is like covering a wound with a bandage and then wondering why the wound doesn’t heal.  PBB



Dr. Peggy - posted on 01/24/2009

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Quoting Jody:

I was diagnosed with FM and CFS after a car accident about 5 years ago. I have a 27 month old boy. At about 5 or 6 months of pregnancy my body extremely swelled up which caused tons of pain. The doctor tested me for the usuals but everything else seemed normal so I just blamed it on the FM. At 27.5 weeks of pregnancy my water broke and the following week I gave birth to my preemie son(3 months early and 2lbs 10 oz.) My son has a mild case of cerebal palsy so his motor skills are delayed. He is now 2 years 3 months old and cannot stand or walk without assistance. His increasing weight with the continued need of carrying him around physically hurts tremendously. He constantly begs me to walk him which I have a hard time denying him even though it kills me and leads to tears somedays.

The FM specialist took me off of all pain killers a few years ago because i have digestive problems. The digestion/stomach really is better since then but it's so hard to live through the pain. I wrote myself a note to check out the monaire. I would love to hear any other suggestions or people in similar situations.


Again, you might check with your specialist again and ask about Cymbalta now that the FDA has declared it a specific treatment for Fibro. It is not a pain killer. It works on the central nervous system which is where Fibro is really taking place. The pain is just a side effect like the fatigue. Seems wrong not to treat the pain, but true.  PBB

Dr. Peggy - posted on 01/24/2009

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Quoting Dawn:

I started taking Cymbalta about 18 months ago for the chronic pain relief it offers people like us. It has helped immensely because it does not cause any flares of my lupus like some of the other Fibro meds do... I also notice I have been able to stay calmer and have less depression when the flares get worse than I used to.


Cymbalta works for me, too. I just realized I have been taking it for 3 years this next April. It is an antidepressant, but was named as a specific treatment for Fibro by the FDA in the past few months. For those of you who haven't tried it or haven't discussed it with your Dr lately, you might bring it up. Now that it is approved, insurance can't treat it an an extra.  PBB

Rachel - posted on 01/24/2009

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I was dx with FM 17 years ago at age 16.  My mother was dx just before me and noticed that I was displaying a lot of the same symptoms.  I was very young to be diagnosed especially that long ago.  They think it was brought on when I had Mono for 2 months at age 13.  Apparently any major stress to the system can set it off. 



I do not have medical insurance so I am unable to afford any precription medication.   I suffer through each day with just ibuprophen and a smile.  My most prevelant symptoms are muscle aches and joint pain, but I also suffer from IBS, migraines, and anxiety.   I noticed several people had complained about heavy periods and I too have menstral issues.  The doctors run multiple tests (all on my dime) and then tell me that my hormone levels are fine and that there is nothing they can do for me.  I've been told this too many times to trust doctors anymore.



I really get angry when everyone tell me that exercising more would help.  I don't sit on my butt all day in some cushy office.  I am on my feet six to eight hours a day constantly moving.  I can barely get home and take care of my family, much less walk, run, or lift weights.  Why do they assume that if you have FM and slightly above average weight that you are lazy?  I eat a very healthy diet and I don't drink or smoke.  My biggest weakness is a sugarfree, non-fat chai tea.  How can working myself into a deeper state of exhaustion be better for me?  When I do "go the extra mile" I end up bed ridden for two to three days in agony. 



Seems to me that doctors don't want to put the time and energy into helping people like me.  They just want to take our money and tell us to be good sheep and quietly follow the herd.  I say that if your tusual ests can't find the answers to my real problems, then you should devise new tests that can.  All doctors that treat FM should have to experience the pain before they dismiss it.

Lindsey - posted on 01/21/2009

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I was diagnosed withy Fibro last year but suffered for many years prior with fatigue, body pain, insomnia for a while etc. I tried Cymbalta but had way too many side effects. I am now taking Monavie, doing yoga and do accupuncture twice a month. So far, I'm feeling better but not 100%.

Andrea - posted on 01/20/2009

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I'm excited to post a regiment that my friend has now been on for 5 months and she has been doing so well. She's tried everything. She is a SAHM of 3 kids and home schools them (which I blame for her tiredness as a joke). I know I'd be EXHAUSTED if I were doing that. Kudos to all you stay at home moms!! Anyway, the regiment is from a company that sells all green products. She takes their vitamins, and a couple other natural pills (including a St. John's Wort), and then the tea they recommend. Again, she has been up moving around, even cleaning. This company sells green household cleaners and they work awesome, so awesome even she doesn't mind cleaning. And since they are green they are completely safe for our little ones (in case they ingest it). The company has been around for 23 years and has NEVER had a death from a child ingesting one of their cleaners. It's worth a try, they are completely risk free, if you don't like it or it doesn't work, you can get your money back. Geez, I feel like a sales lady. I'm just excited to tell you all about it. Let me know if you are interested and I can email you some info about them.

Kat - posted on 01/20/2009

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I had no idea there were so many moms out there in my situation. I've got 5 kids, FM, CFS, RA, and lymphedema. So far I've scraped by with triple doses of Tylenol Arthritis and an occasional Skelaxin, but there are days when I think it's time to give in and let my doctor prescribe something stronger.

Elizabeth - posted on 01/18/2009

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I understand what you all mean with it being hard to accept in the beginning.  I knew I had fibro for a long time, but actually hearing the doctor diagnose me with it felt like I was being sucker punched. 



Anyhow, I have a sleeping disorder in which the lack of sleep has caused CFS, FM and carpal tunnel syndrome.  On top of that I have severe arthritis in both knees.  I was recently in a research study for Fibro and sleep disorders using the drug Xyrem.  It worked wonderfully until they raised the dose which caused anxiety.  I had to leave the study since I couldn't follow their dosing schedule.  I am in the process of getting back on the drug but this time will take it as needed for me.  I hate living off of pain meds, but will take them when I need to make it through the day.   I would just like to spend my days with my family and in my career pain free!.........wouldn't we all? :)

Onikki - posted on 01/17/2009

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I have Fibro. Some days are good and some days i cant move at all. I was diagnosed 3 years ago but felt it before then. I have 3 kids aged 8, 14, 15.

Toni - posted on 01/13/2009

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I have the same problems. I was diagnosed 7 years ago. I have accepted it now, but it was very hard at first. I had a wonderful job, small children, active, and they slowly stoped because of the pain. It took a lot of testing of different meds . but I am ok now. Now I do yoga, and it is awesome for this disorder. It takes time to learn to manage with a whole new life style.

Rebecca - posted on 01/13/2009

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dx with fibro about 7-8 years ago.  Have a 2 1/2 year old now.  few flares during pregnancy.  Just had 2 ovarian tumors removed Oct 08.  Plus winter is hard on me as well.  Some days are great...others I want to crawl into bed all day.

Kristi - posted on 01/08/2009

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Thank you so much for your response. Most of the time I feel really alone since no one else I know is going through this. I was curious about the meds. for later, if I can help it I would rather not take anything if I become pregnant. I have been able to manage somehow with both of my kids, so I am praying that it will be the same way if we are able to have another one. My dr. has offered me no advice about my symptoms, does the Lupus effect your hands? I thought I have been going crazy for years. My hands frequently don't seem to do what I tell them to do, I have pain, stiffness, numbness and it is hard for me to do anything simple like pick up change. I have been tested for RA, but the tests have come up negative. My regular dr. seemed to be unsure if this was from the Lupus.

Beth - posted on 01/07/2009

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I was diagnosed about 4 months ago. I knew something was wrong when i went from working out everyday at 5am and feeling great to not being able to get up anymore and hardly being able to move. The pain was terrible but all of u know that. I have been taking lyrica and it its ok. I also have been drinking xango juice and i swear by it. It is like a miracle drink. I do 2 ounces in the morning and 2 before 4 in the afternoon. I can actually get up and move around and I feel great! It gives me energy and the pain is more than tolerable. I feel like my old self. I have 2 children ages 2 1/2 and 4 and it feels so good to be able to play with them and spend time with them without secretly crying because I hurt so bad. I am not saying I never get flare ups because I do just not as much or as often. It is rather expensive but my husband says its worth it just to see me smile again. I pay 100.00 for a case that is a month supply. It really does work. It might take you 2 bottles before you notice depending on how bad you are but i noticed a difference in almost 2 weeks. If you are skeptical dont be with this. I promise you it will help!!! I am not the only one who agrees. all of my family is drinking it and all believe in it. I hope this helps. If you dont want to get a case at least try a bottle. Anyone who takes my advice and feels it works PLEASE let me know

Dawn - posted on 01/07/2009

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And to all- please ignore the typos... having a really bad RA and Lupus flare making my fingers not move well and since I have neuropathy of the hands the pain and numbness makes typing harder .

Thanks for understanding.

Dawn - posted on 01/07/2009

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Regarding steroids and treatment of Lupus or Fibro... there are Rheumatologists who believe that these are the cure all. I am not saying they are not effective and necessary, however, these should be used as the last resort when milder or less life-altering meds are no longer as option.

For info on why I feel this way check out the conversation Re: Moms with MS.

As for my experiences with Plaquenil and Cymbalta... very good I have to say. I do have contstant pain, but it is much worse of I do not take the cymbalta every day ( I can go 2-3 days if I forget it before the3 pain goes beyond tolerable) and the plaquenil takes 2-3 months to really start taking affect so once you start it you will not notice a change right away. Conversely, if you stop or forget to take it you would have to be off it for several weeks before the blood levels drop enough for the symptoms to come back full force ( usually). Of course there are considerations to be made with all medication regimes... Nursing or women who are or are planning to become pregnant need to find out whether the meds cross the plancental barrier- meaning they would also be cycled thru the baby's system and could therefore adversely affect the baby inutero. In the case of cymbalta there are no real trials with pregnant women so I would not take it if it were me. But the plaquenil has been used for Malaria treatment for many years so there are probably some good stats on how that drug works with pregnancy/nursing. I was not diagnosed with any of my problems until after I had my 6th ( and very last) child. I do not think being diagnsed prior to his birth would have changed my decision to have 6 children, but it would have made some of the other health problems that developed during my pregnancies predicatable so a plan of action would have been in place for the what if scenarios.

Feel free to email me if you have any questions about what possible complications can arise during pregnancy...

And if your doctor is not receptive to your ideas, thoughts and wishes regarding you health and medical care then please go to another one for a second opinion. I have been to 3 rheumatologists looking for one that would look at my specific problems and not try to put me into a treatment plan that is One Size Fits All or is used for treatment of other auto immune problems but not especially for my problems.

I hope I have helped to answer questions or to give you answers that you can go to your doctor with on the next visit.

Good Luck and stay as active as your able to...my biggest problem has been that I can keep the pain at bay as long as I am moving and on the go, but as soon as I stop I am exhausted and in pain... try to find a balance of motion and rest that will prevent you from getting run down since that will only trigger or exaccerbate a flare... Not Good!

Kristi - posted on 01/07/2009

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Quoting Dawn:



Quoting Kristi:




I have recently been diagnosed with Lupus, has anyone here received that diagnoses along with the FM?










I was diagnosed with Fibro first. Then about 6 months later I had severe chest pain, high blood pressure and was rushed to the hospital where I was diagnosed with Idiopathic Pericarditis ( fluid around the heart with no known cause). I was off work being treated for that for about 6 weeks with no cause found. I lived with the Fibro pain and tthe added chest pain and shortness of breath made it even worse. A few months later I had an episode where I literally collapsed when I tried to get out of bed one morning. I had to crawl to the phone to get a friend to help me to the Doctor. He said he thought it was a virus and that it was probably to do with the heart problem. On to a cardiologist at Johns Hopkins and a side trip to a rheumatologist ( who was totally worthless since she did not "believe" in Fibro and thought it was an excuse that fat lazy people used to get out of working... I wish!) The cardiologist did tons of tests and he is the one that said I had an auto immune illness and that Lupus was what he would bet based on the bloodwork and that the fibro was most likely a symptom of the fibro.... so I ended up finally with a dx of Lupus with secondary Fibro and pericarditis... then last Jan. I was given the added dx of sero-negative rheumatoid arthritis... yeah for me!






I use Plaquenil for the lupus , cymbalta for the chronic pain and for the daily chest pain and soft tissue inflammation around the heart  and RA pain about 800 mg of Ibuprofen a day which help as long as my IBS does not flare up too...





I have only been to my new Dr. once now, and he tried to put me on steroids. I am nursing and I would of had to hold my son off for 4 hours after taking the steroids twice a day, that would be a nightmare within itself so I decided not to take the steroids. The Dr. said the Plaquenil would be good to take after I weaned, but my husband and I have decided to start trying to get pregnant again. What has your experience been with the Plaquenil and the cymbalta? I have been unable to take any meds. for the FM because of nursing and as far as I know nothing has really worked well for anyone.  The Lupus scares me, I have only heard of horror stories about it. I go back in next week to find out more results from a chest x-ray and 12 vials of blood from November. I wish FM was from being lazy too, ha ha! I am wondering if this guy feels the same way, like I said I've only had one appt. so far, but he wouldn't even talk to me about the FM! I am overall extremely frustrated with all of this.

[deleted account]

Yes! I've been dx with fibro for 10 years. BUT...I'm being tested to see if it's actually a mitochondrial disorder/disease instead! I live in VA and have 5 kids with only 4 in the home now. I homeschool 3 of the 4 and every day is a challenge. I'm in constant pain and take Neurontin, Cymbalta, Skelaxin and Motrin. I also suffer with extreme fatigue.

User - posted on 01/06/2009

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Quoting Roxane:

 I have also been put on Lyrica. I am up to 300mg a day, and am finding that I am slowly able to move again.
The increase with the Lyrica, the vitamins, have helped - but it is a slow process.





Watch out for Lyrica!  I thought it to be a miracle drug and was up to 300+ mg a day and then developed muscle spams which lasted for days.  It was like having a Charlie horse for days on end and no relief.  My Rhumatologist has another Fibro patient with the same symptoms.  Seh weened us both off which immediatly stopped the cramping.  She though this culd be a  rare unidentified side effect.  I was put back onto Lyrica with a much smaller dosage.  The pain is at a tolorable level but I do not have the cramping.  The Dr. jst recently add Effexor to my regiment which has seemed to help my mood swings.



 



Has anyone else developed extremly heavy period swhich lasts for the whole week?  I have been tested for a hormone inbalance but it came back negative.  This became such a problem that I had to have the durmabrasion procedure performed (where  they burn away the uterian lining)  I never planned on ahving any more kids so this option was acceptable to me but I wonder if the Fibro had anythin to do with this.  I had a little relief after the procedure. 

Dawn - posted on 01/06/2009

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Quoting Kristi:



I have recently been diagnosed with Lupus, has anyone here received that diagnoses along with the FM?






I was diagnosed with Fibro first. Then about 6 months later I had severe chest pain, high blood pressure and was rushed to the hospital where I was diagnosed with Idiopathic Pericarditis ( fluid around the heart with no known cause). I was off work being treated for that for about 6 weeks with no cause found. I lived with the Fibro pain and tthe added chest pain and shortness of breath made it even worse. A few months later I had an episode where I literally collapsed when I tried to get out of bed one morning. I had to crawl to the phone to get a friend to help me to the Doctor. He said he thought it was a virus and that it was probably to do with the heart problem. On to a cardiologist at Johns Hopkins and a side trip to a rheumatologist ( who was totally worthless since she did not "believe" in Fibro and thought it was an excuse that fat lazy people used to get out of working... I wish!) The cardiologist did tons of tests and he is the one that said I had an auto immune illness and that Lupus was what he would bet based on the bloodwork and that the fibro was most likely a symptom of the fibro.... so I ended up finally with a dx of Lupus with secondary Fibro and pericarditis... then last Jan. I was given the added dx of sero-negative rheumatoid arthritis... yeah for me!



I use Plaquenil for the lupus , cymbalta for the chronic pain and for the daily chest pain and soft tissue inflammation around the heart  and RA pain about 800 mg of Ibuprofen a day which help as long as my IBS does not flare up too...

Tracy - posted on 01/06/2009

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I "officially" got a dx about 9 years ago, but I think I've had it at least 12 years.  Lots of sleep and exercise is the key for me.  I am not on any medications even OTC.  It is worse from November to February for me.  Some days is tough to even function..  I've never missed work or an event due to this either.



Hope this information can help.. Good Luck to you!

Kristi - posted on 01/06/2009

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I was diagnosed with FM 7 years ago. At the time I was in massage school and receiving the massages helped enormously! After my first child was born 4 years ago I decided to stay home and quit my job, and now can't afford to get massages, which is ironic since I do them. I would wholeheartedly recommend getting massage from someone with specific training in FM. I have recently been diagnosed with Lupus, has anyone here received that diagnoses along with the FM?

[deleted account]

Hi all. I was diagnosed with FM about a year ago. I learned alot from the Rheumatologist I was sent to. He had treated some FM patients, and had a lightbulb moment with the patients he did treat. All of the patients he treated were either Vit D deficient, and or low Iron. I went to him in great pain and he put me on a regiment with these Vitamins. I started feeling great about 2 months after taking. I was able to move, get out of bed, and weened myself off the antidepressants my GP put me on.
I had a set back with an injury - and have been in great pain since. I tried Cymbalta, and had an unfounded side effect (facial, and torso muscle spasms) so I was weened off that med. I have also been put on Lyrica. I am up to 300mg a day, and am finding that I am slowly able to move again.
The increase with the Lyrica, the vitamins, have helped - but it is a slow process. I do find that taking one day and doing NOTHING helps greatly, and trying to minimize stress also helps.
Thank you for the posts. I don't feel so alone in what I am going through.

[deleted account]

I was diagnosed with FM and CFS after a car accident about 5 years ago. I have a 27 month old boy. At about 5 or 6 months of pregnancy my body extremely swelled up which caused tons of pain. The doctor tested me for the usuals but everything else seemed normal so I just blamed it on the FM. At 27.5 weeks of pregnancy my water broke and the following week I gave birth to my preemie son(3 months early and 2lbs 10 oz.) My son has a mild case of cerebal palsy so his motor skills are delayed. He is now 2 years 3 months old and cannot stand or walk without assistance. His increasing weight with the continued need of carrying him around physically hurts tremendously. He constantly begs me to walk him which I have a hard time denying him even though it kills me and leads to tears somedays.



The FM specialist took me off of all pain killers a few years ago because i have digestive problems. The digestion/stomach really is better since then but it's so hard to live through the pain. I wrote myself a note to check out the monaire. I would love to hear any other suggestions or people in similar situations.

[deleted account]

Fibromyalgia and CFS here as well. We've tried LOTS of meds but couldn't find anything that worked. Through my sister,(also FM and CFS) I discovered some wonderful supplements that work great for me. I would have to say that is the hardest part of FM - everyone's symptoms and results from meds is varied.



I found sticking with a clean eating and exercising daily (not like a fitness nut or anything) has helped a lot for me. And those supplements, 5 htp especially.



My symptoms did not improve with my last pregnancy and really kicked into high gear shortly after. I still have major flare ups, especially around TOM but have pretty consistent pain and fatigue otherwise.

LaToya - posted on 12/15/2008

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Hi - I was diagnosed with fm about 6 months ago. I have two kids - ages 3 years and 15 months - and am a graduate student working on a PhD and JD. I was okay during both pregnancies, and my symptoms really peaked a few months ago. Right now, I'm feeling pretty bad in constant pain, and my doctors haven't yet figured out what to do. How do you all manage to be a mom of young kids and deal with the pain?

User - posted on 12/01/2008

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I was diagnosed about a year ago with fibro. I have two children one is 8yrs old and the second is 5yrs old. I work full time and just completed my masters degree. I had very light symptoms from my first pregnacy but the more stress I added to my life the worse the symptoms got. I have an aunt who suffers from lupus and a grandmother who suffered from parkinsons. I was diaganosed through a genetic triangulation test for lupus. My symptoms started escalating while I was pregnant with my second child. After he was born the symptoms began to peak. When I discussed chronic life long issues, such as hard to get over sinus infections, along with my family history, my doctor felt that I had suffered most of my life with it but the symptoms were not bad enough for a doctor to push a diagnoses. My doctor did tell me that fibro gets worse with every pregnacy because of the hormonal change which occurs in our body. Where I seeme to really suffer was in the rhelm of muscle aches and anxiety. My Dr. has me on efexor for the anxiety (miricle drug) and lyric (not so sure I like it). Lyric causes me to really gain weight (20 lbs in 2 months with daily exercise) and have muscle spasms for days (this seems to be a very rare and unknow side effect). I have a very low dosage of Lyric to take the edge off the pain. Another thing I have found helps is taking one day a week as a down day/movie day. Get a babysitter or grandparent or spouse to take the kids for a few hours to rest up and relax. Try these (weekly massages help if your dr will write you a perscription)

[deleted account]

Hey ladies,

I also have FM and CFS. I have a two year old son and almost 3 month old boy girl twins. My FM was pretty under control during both pregnancies but is back with a vengeance now :-( I am sure the 17 weeks of bedrest didn't help and now I also have a separated pelvis from the pregnancy. In other words I am a mess :-( Hoping things get better soon!

Gentle hugs,

Marisa

PS when did you guys have your babies? My twins were born Sept 7th.

Marla - posted on 11/28/2008

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I have Fibro too - had a baby 3 months ago and agree with Kacy, had no issues while I was pregnant...and now, back to life before.

Kacy - posted on 11/26/2008

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I do have fm and am suffering greatly from it right now. I was just recently diagnosed back in jan, got pregnant and felt great, but its been about 2 months since my son was born and Im in constant pain. What do you do to help manage the pain?

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