Living with Fibromyalgia

Hello everyone,

I'm a 20 year old female and I was diagnosed with Fibromyalgia 2 years ago at the age of 18. I've been in pain really as long as I could remember. The basic touch of a persons hands on my neck would leave me in tears. My mother was diagnosed with Fibromyalgia at the age of 29 years old. I sat down and talked to my mother and explained to her my symptoms and at the time, while insured I visited my primary care doctor, who gave me a script of Norco 10/325 and referred me to Pain Management. I went to the Pain Management Appointment and they did a series of X-Rays where they found the only physical damage I had was related to my left knee that I broke in a Skiing Accident two years prior. They begin to start poking me with pressure all of my body in certain places. While they were doing it I was crying my eyes out. Then once they were done my body went into a state of shock and I could hardly move to get into my car. The Pain Management Doctor told me that he couldn't help me and gave me a referral to a Rheumotologist. I went to the appointment and was diagnosed with Fibromyalgia.

My doctor put me on Cymbalta and sent me on my way. I took it for a few days and it made me feel horrible so I stopped taking it. I immediately made a new appointment and not two days later I got a letter notifying me that my Health Insurance had been canceled. I have never been insured since because I can't afford it and I also have never been treated for my Fibromyalgia.


Now, two years later, the pain is even worse. I wake up multiple times per night in horrible pain. Once I finally wake up to start my day I have to lay in bed and get up the courage to get out of bed because I know that it's going to hurt so bad. The littlest things cause pain to me. Exercising makes me beat red (Not a normal red) and I go into a flair. I still do it everyday regardless. My newest symptom is the Fibromyalgia Rash. If you are not familiar with it, there is articles all over the internet. It is not a symptom in all Fibromyalgia patients but I happen to be one of them.


So I'm calling all Fibromyalgia MFP Members. How do you deal with your daily pain? Do you just push yourself regardless? I'd also love if you added me so we can talk!

Take care everyone!


fla-gators.jpg

GO GATORS!!! ;)

Replies

  • sandeeface518
    sandeeface518 Posts: 41 Member
    It took 10 years of multiple doctors for my mother and grandmother to get a diagnosis of fibromyalgia. I was told that it's possible I will experience the same pain later in my life and I thought I would at least be in my 30s before my pain started. I have tender points mainly on my upper body, I haven't slept well in years and some days I just physically cant bring myself to do anything other than what is absolutely vital to my daily living. I have twin toddlers who don't understand why mommy hurts so bad in the morning. My primary care physician actually told me the reason I'm experiencing so much pain is because of depression and my weight. He is one of the ones who doesn't believe it's an actual disease. I'm reluctant to go see other doctors for the official diagnosis because it often takes years only to end up on narcotic pain relievers and anti depressants. So most days I just suffer through the pain, rest often and use my fair share of heating pads and ice packs.
  • Irvika
    Irvika Posts: 11
    I become having the rash recently too. Oh I want to take my skin off. I have discovered a few products that makes me have a rash flair...like a anti mosquito spray I use.
    Let us not let fibro impede our walk to being healthy and fit.
  • miracle4me
    miracle4me Posts: 522 Member
    I become having the rash recently too. Oh I want to take my skin off. I have discovered a few products that makes me have a rash flair...like a anti mosquito spray I use.
    Let us not let fibro impede our walk to being healthy and fit.
    This
    I suffer with Fibro and also Chronic fatigue plus other health issues. I know what it is like especially my back,legs, arms to be touched softly and yell in pain. I did not know abut the rash, is it on your arms? I have red blotches on my arms from wrist to elbow and it looks more blotchy than a rash so I do not know how to describe it.
  • miracle4me
    miracle4me Posts: 522 Member
    Hello everyone,

    I'm a 20 year old female and I was diagnosed with Fibromyalgia 2 years ago at the age of 18. I've been in pain really as long as I could remember. The basic touch of a persons hands on my neck would leave me in tears. My mother was diagnosed with Fibromyalgia at the age of 29 years old. I sat down and talked to my mother and explained to her my symptoms and at the time, while insured I visited my primary care doctor, who gave me a script of Norco 10/325 and referred me to Pain Management. I went to the Pain Management Appointment and they did a series of X-Rays where they found the only physical damage I had was related to my left knee that I broke in a Skiing Accident two years prior. They begin to start poking me with pressure all of my body in certain places. While they were doing it I was crying my eyes out. Then once they were done my body went into a state of shock and I could hardly move to get into my car. The Pain Management Doctor told me that he couldn't help me and gave me a referral to a Rheumotologist. I went to the appointment and was diagnosed with Fibromyalgia.

    My doctor put me on Cymbalta and sent me on my way. I took it for a few days and it made me feel horrible so I stopped taking it. I immediately made a new appointment and not two days later I got a letter notifying me that my Health Insurance had been canceled. I have never been insured since because I can't afford it and I also have never been treated for my Fibromyalgia.


    Now, two years later, the pain is even worse. I wake up multiple times per night in horrible pain. Once I finally wake up to start my day I have to lay in bed and get up the courage to get out of bed because I know that it's going to hurt so bad. The littlest things cause pain to me. Exercising makes me beat red (Not a normal red) and I go into a flair. I still do it everyday regardless. My newest symptom is the Fibromyalgia Rash. If you are not familiar with it, there is articles all over the internet. It is not a symptom in all Fibromyalgia patients but I happen to be one of them.


    So I'm calling all Fibromyalgia MFP Members. How do you deal with your daily pain? Do you just push yourself regardless? I'd also love if you added me so we can talk!

    Take care everyone!


    fla-gators.jpg

    GO GATORS!!! ;)

    This
    It has been at least 10 yrs or more I have suffered with Fibromyalgia along with severe Chronic fatigue. Do you also have a severe lack of energy? No amount of sleep makes me feel refreshed I wake up just as tired. I suffer with Fibro and also Chronic fatigue plus other health issues. I know what the constant pain is like especially at the base of my spine ,legs, arms when my husband tries to hug me and touches painful areas softly I yell out in pain. When my little pup while laying in bed walks on my upper arm the pain is indescribable.

    I have red blotches on my arms from wrist to elbow and it looks more blotchy than a rash so I do not know how to describe it. It would be interesting to see if anyone else has this. Someone mentioned they have a red rash and yes I know the shame of covering my arms because some days the red blotches are worse than other days. I started to take a tablespoon of coconut oil a day and it nearly went away on some days. Please feel free to add me as a friend and whoever else chooses to on this thread. In my profile i wrote about the Fibromyalgia.

    The Doctor tells me there is no cure, just like with Chronic Fatigue and most people that have Fibro it seems the Chronic Fatigue, and Adrenal Gland Fatigue goes with it. Does anyone know what causes it? I have had this for many years and both went un diagnosed. Your only 20 yrs old I am over twice your age. I am sorry you suffer with this at your young age and only someone who has it also can understand when we try to explain our symptoms.
  • wackyfunster
    wackyfunster Posts: 944 Member
    Sorry to hear that... I know Fibromyalgia is a pretty brutal thing to deal with.

    Disclaimer: I am not a doctor. I have taken some grad-level classes in psychopharmacology, and am pretty knowledgeable in the subject for a layman, but want to get that out there before offering any information. This is not to be taken as medical advice, use at your own risk, no warranty of any sort is provided yadda yadda yadda.

    Ok.

    The drugs used to treat FM operate on two neurotransmitter systems: norepinpherine(aka noradrenaline) and serotonin.
    There are readily available supplements that will also increase the availability of these neurotransmitters, and may provide similar effects.
    For serotonin, you can supplement 5-HTP.
    For NE, there are a lot of things you can do... most stimulants will increase NE levels, e.g. caffeine. Supplementing L-Tyrosine will help the body produce more of its own.
    You may also want to look into something that increases dopamine levels, which is the neurotransmitter responsible for pain management. L-Tyrosine will do this as well, to an extent. Macuna Pruriens would do this a lot better, as it contains L-Dopa.

    Things to note: If you do start supplementing these, add them one at a time, and verify there are no unmanageable side effects. Do some research and get the dosage right. When you add another, be on guard for interactions. The 5-HTP and L-Tyrosine should not have any significant interaction, but the Macuna pruriens is basically the same as L-Dopa, and has potential reactions with just about everything. Ideally you would do this under the supervision of a doctor.

    Also, if you take the Macuna pruriens and decide to discontinue, don't do it cold turkey, taper the dose off.

    Basically, these supplements work. 'Natural' and/or 'supplement' does not mean 'safe', but given the alternative, doing some research and looking in to them may be helpful if you are unable to get prescription meds. I personally have used all three of the supplements mentioned with no major side-effects.

    If I were hypothetically to use these to treat FM, I would start with L-Tyrosine, then add the 5-HTP, then the Macuna Pruriens.

    I hope that this helps.
  • miracle4me
    miracle4me Posts: 522 Member
    Sorry to hear that... I know Fibromyalgia is a pretty brutal thing to deal with.

    Disclaimer: I am not a doctor. I have taken some grad-level classes in psychopharmacology, and am pretty knowledgeable in the subject for a layman, but want to get that out there before offering any information. This is not to be taken as medical advice, use at your own risk, no warranty of any sort is provided yadda yadda yadda.

    Ok.

    The drugs used to treat FM operate on two neurotransmitter systems: norepinpherine(aka noradrenaline) and serotonin.
    There are readily available supplements that will also increase the availability of these neurotransmitters, and may provide similar effects.
    For serotonin, you can supplement 5-HTP.
    For NE, there are a lot of things you can do... most stimulants will increase NE levels, e.g. caffeine. Supplementing L-Tyrosine will help the body produce more of its own.
    You may also want to look into something that increases dopamine levels, which is the neurotransmitter responsible for pain management. L-Tyrosine will do this as well, to an extent. Macuna Pruriens would do this a lot better, as it contains L-Dopa.

    Things to note: If you do start supplementing these, add them one at a time, and verify there are no unmanageable side effects. Do some research and get the dosage right. When you add another, be on guard for interactions. The 5-HTP and L-Tyrosine should not have any significant interaction, but the Macuna pruriens is basically the same as L-Dopa, and has potential reactions with just about everything. Ideally you would do this under the supervision of a doctor.

    Also, if you take the Macuna pruriens and decide to discontinue, don't do it cold turkey, taper the dose off.

    Basically, these supplements work. 'Natural' and/or 'supplement' does not mean 'safe', but given the alternative, doing some research and looking in to them may be helpful if you are unable to get prescription meds. I personally have used all three of the supplements mentioned with no major side-effects.

    If I were hypothetically to use these to treat FM, I would start with L-Tyrosine, then add the 5-HTP, then the Macuna Pruriens.

    I hope that this helps.

    This
    Thank You for this information I am going to go and buy L-Tyrosine, then add the 5-HTP. What are the side effects of Mauna Pruiens? Why the warning not to stop it cold turkey,what would happen? Do you know what the cause of this is?
    I also take chewable D-Ribose by Now Sports 1500 mg as many as 6 a day since Chronic Fatigue goes along with Fibro for me. It seems to give me a tiny bit more energy. I am experimenting with D3 since I seldom get out in the sun, instant disolve tablets 10,000 IU and I take 3 at one time. today I upped it to 4 tablets that is 40,000 IU because nothing was happening for a week on 30,000 . When I first started taking the D3 I started out at one tablet gradually I tested to see if I felt better. Is this dangerous what I am doing? I read where people were cured when they took as high as 50,000 IU for a few weeks.
  • spngebobmyhero
    spngebobmyhero Posts: 823 Member
    I don't have fybromyalgia, but I did a little research about paleo diet and fybromyalgia, because eating paleo has helped me reduce my joint pain, fatigue, and stomach issues. Eating a paleo diet can reduce inflammation and general reactivity in the body. If you don't have health insurance, then its worth looking into something that can reduce your symptoms with diet alone.

    It also looks like some supplements might help, such as vitamin D.

    Some forum information with people who have tried it:
    http://www.marksdailyapple.com/forum/thread34912.html
    http://paleohacks.com/questions/1990/paleo-and-fibromyalgia#axzz1xJR0BwkI
  • wackyfunster
    wackyfunster Posts: 944 Member
    I don't have fybromyalgia, but I did a little research about paleo diet and fybromyalgia, because eating paleo has helped me reduce my joint pain, fatigue, and stomach issues. Eating a paleo diet can reduce inflammation and general reactivity in the body. If you don't have health insurance, then its worth looking into something that can reduce your symptoms with diet alone.

    It also looks like some supplements might help, such as vitamin D.

    Some forum information with people who have tried it:
    http://www.marksdailyapple.com/forum/thread34912.html
    http://paleohacks.com/questions/1990/paleo-and-fibromyalgia#axzz1xJR0BwkI
    Not to dissent or say that it's not worth a try, but currently there is not believed to be a link between inflammation and FM, and anti-inflammatory measures have not been shown to be effective except inasmuch as they also suppress pain. It's likely that people reporting positive results from such a diet are actually suffering from multiple sclerosis, which has similar symptoms, and is an inflammatory auto-immune disorder. Definitely worth looking into if there is still any chance that the issue is MS rather than FM, but unlikely to be helpful if the issue is definitely FM.

    There are a lot of good "alternative" treatment options for MS.
  • wackyfunster
    wackyfunster Posts: 944 Member
    This
    Thank You for this information I am going to go and buy L-Tyrosine, then add the 5-HTP. What are the side effects of Mauna Pruiens? Why the warning not to stop it cold turkey,what would happen? Do you know what the cause of this is?
    I also take chewable D-Ribose by Now Sports 1500 mg as many as 6 a day since Chronic Fatigue goes along with Fibro for me. It seems to give me a tiny bit more energy. I am experimenting with D3 since I seldom get out in the sun, instant disolve tablets 10,000 IU and I take 3 at one time. today I upped it to 4 tablets that is 40,000 IU because nothing was happening for a week on 30,000 . When I first started taking the D3 I started out at one tablet gradually I tested to see if I felt better. Is this dangerous what I am doing? I read where people were cured when they took as high as 50,000 IU for a few weeks.
    I've heard that vitamin D absorption varies a lot between individuals, and have heard of people being put on doses similar to what you're saying. According to wikipedia (i know, right?):

    Toxicity
    For more details on this topic, see hypervitaminosis D.
    In healthy adults, sustained intake of more than 1250 micrograms/day (50,000 IU) can produce overt toxicity after several months;[76] those with certain medical conditions such as primary hyperparathyroidism[77] are far more sensitive to vitamin D and develop hypercalcemia in response to any increase in vitamin D nutrition, while maternal hypercalcemia during pregnancy may increase fetal sensitivity to effects of vitamin D and lead to a syndrome of mental retardation and facial deformities.[77][78] Pregnant or breastfeeding women should consult a doctor before taking a vitamin D supplement. For infants (birth to 12 months), the tolerable upper limit (maximum amount that can be tolerated without harm) is set at 25 micrograms/day (1000 IU). One thousand micrograms (40,000 IU) per day in infants has produced toxicity within one month.[76] After being commissioned by the Canadian and American governments, the Institute of Medicine (IOM) as of 30 November 2010, has increased the tolerable upper limit (UL) to 2500 IU per day for ages 1–3 years, 3000 IU per day for ages 4–8 years and 4000 IU per day for ages 9–71+ years (including pregnant or lactating women).[79] Vitamin D overdose causes hypercalcemia, and the main symptoms of vitamin D overdose are those of hypercalcemia: anorexia, nausea, and vomiting can occur, frequently followed by polyuria, polydipsia, weakness, insomnia, nervousness, pruritus, and, ultimately, renal failure. Proteinuria, urinary casts, azotemia, and metastatic calcification(especially in the kidneys) may develop.[76] Vitamin D toxicity is treated by discontinuing vitamin D supplementation and restricting calcium intake. Kidney damage may be irreversible. Exposure to sunlight for extended periods of time does not normally cause vitamin D toxicity.[77] Within about 20 minutes of ultraviolet exposure in light-skinned individuals (3–6 times longer for pigmented skin), the concentrations of vitamin D precursors produced in the skin reach an equilibrium, and any further vitamin D that is produced is degraded.[80][80]
    Published cases of toxicity involving hypercalcemia in which the vitamin D dose and the 25-hydroxy-vitamin D levels are known all involve an intake of ≥40,000 IU (1000 mcg) per day.[77] Recommending supplementation, when those supposedly in need of it are labeled healthy, has proved contentious, and doubt exists concerning long term effects of attaining and maintaining high serum 25(OH)D by supplementation.[81]
  • sazzyp1973
    sazzyp1973 Posts: 517 Member
    Hi,

    I have only been diagnosed with osteoarthritis and fibromyalgia in the past six weeks so I am relatively new to dealing with it! It took about two years building up to diagnoses and it was a pretty miserable time.

    Now though I have drugs to help me and I am making positive changes to my lifestyle. I try and do some exercise everyday but don't push myself too much and don't give myself a hard time if I can't cope.

    I am in some level of discomfort at all times but there are good days. I am still learning how to not go crazy and overdo things on those days as then I feel it the day after.

    It has certainly been easier since being monitored by the specialist and if there is any way you can get back to seeing a doctor I would recommend it. I am lucky being in the UK to have the NHS so do not need insurance to see a doctor. I have no idea how much that would cost but getting the right meds will help you. For me I had to try a few different drugs before getting on the one I am on now. Early days for it but so far no nasty reactions like the others!

    Getting good sleep is key to helping you heal. This is what I have a problem with but I am working on it. You only get restorative sleep when you are in deep sleep so this is really important. Lack of sleep means the body feels the pain more, which ironically stops you from getting sleep. And so the cycle continues.

    Another thing is to not get down or depressed about the condition which is one of the key symptoms of fibromyalgia, which is not surprising when you are in pain all the time.

    Take it one day at a time and just listen to your body and do what you can. While it seems impossible to want to go and do some exercise, keeping mobile in some form will certainly help over time.

    Add me and feel free to PM any questions if you like. I am happy to answer them if I can!

    All the best, I know it isn't the nicest thing to live with but it is important to get to a point where the illness is manageable and a small part of you rather than the all consuming. Take care
  • buckeyegirl0103
    buckeyegirl0103 Posts: 194 Member
    I have had fibro for 11 years now. I get flare ups every now and then, but for the most part it has been under control. I find if I do lots of housework, or lots of strenuous activity, I am bad the next day. I was on Lyrica for years, and it really helped, but started giving me upper thigh pain....weird side effect. Then I tried cymbalta and got hives from it. Now, I take nothing. I have recently started C25K training, surprisingly, it does not affcet the fibro where other exercises do.

    Thanks for the info on the rash! NEVER KNEW THIS!! I have suspected my youngest has juvenile fibro and she has BAD skin issues....lots of itchy skin and breaks out in rashes for no reason....now i know why!!
  • spngebobmyhero
    spngebobmyhero Posts: 823 Member
    I don't have fybromyalgia, but I did a little research about paleo diet and fybromyalgia, because eating paleo has helped me reduce my joint pain, fatigue, and stomach issues. Eating a paleo diet can reduce inflammation and general reactivity in the body. If you don't have health insurance, then its worth looking into something that can reduce your symptoms with diet alone.

    It also looks like some supplements might help, such as vitamin D.

    Some forum information with people who have tried it:
    http://www.marksdailyapple.com/forum/thread34912.html
    http://paleohacks.com/questions/1990/paleo-and-fibromyalgia#axzz1xJR0BwkI
    Not to dissent or say that it's not worth a try, but currently there is not believed to be a link between inflammation and FM, and anti-inflammatory measures have not been shown to be effective except inasmuch as they also suppress pain. It's likely that people reporting positive results from such a diet are actually suffering from multiple sclerosis, which has similar symptoms, and is an inflammatory auto-immune disorder. Definitely worth looking into if there is still any chance that the issue is MS rather than FM, but unlikely to be helpful if the issue is definitely FM.

    There are a lot of good "alternative" treatment options for MS.

    Yes, I did read that it is not inflammation, I just read some people who have had success with it and find that their pain is greatly reduced. I just figure its worth a shot, especially with limited medical access. I have heard about the great success of an anti-inflammatory diet with MS patients.
  • nell1972
    nell1972 Posts: 19
    I haven't been diagnosed......but a number of times recently I've Googled the latest weird pain I have in my body, and Fibromyalgia keeps coming up. I did one of those online tests, and the result suggested I was "100% likely to get a positive diagnosis", haha!!

    I've never thought much about it, I figured my chronic aching and general pain was down to my weight, age (I'm 39), and possibly the onset of osteoarthritis (which my mother has).

    I do not have symptoms anywhere near as bad as have been described here, however, so I'm not rushing off to the doc to get labelled a hypochondriac neurot. I do, however, suffer intense pain from any pressure to my arms and legs (this was particularly intense when I was pregnant for a short time, I could barely get dressed it was so bad); I have constant pain in my hips, spine, neck, shoulder blades and around my ribs; and whilst I can and do exercise, it does cause me a considerable amount of pain which I just put down to having an unfit body. Gardening, bathing the dog and cleaning the fish tank cause me a level of pain and stiffness which seems disproportionate to the amount of work I've done!!

    The reason I have fallen off the diet and exercise wagon is all too often because exercise is so painful. I just thought I had no staying power!!!

    But anyway, good luck to all those who have this condition so severely and manage it so courageously. It can't be easy.
  • mturgeon05
    mturgeon05 Posts: 204
    Hi all,

    I was just diagnosed with Fibro 2 weeks ago after 13 years of pain (I am 31). I believe most of my Fibro symptoms were triggered by a horrible case of Mono when I was 17, but I have always had some symptoms-my head has always been so sensitive that I would scream when someone else would brush or braid it.

    In high school I played 3 varsity sports, had a waitressing job, and trained horses for competition. I ran 10+ miles a day and lifted 3 times a week.

    I have spent the last 13 years with: fainting spells, zero energy, insomnia, IBS, chronic pain, a horrible rash on my arms and legs, brain fog, headaches, depression, and an anxiety disorder. I have been tested for Crohns, Lupus and every other chronic condition you could think of.

    2 weeks ago I finally found a doctor who believed that it was more than something in my head and listened to me when I said I wanted a full panel of tests run. Seeing all the numbers together she was able to make the diagnosis.

    According to my blood work, I was severely deficient in: Vitamin D, Iron and Zinc. I am currently taking 50,000 IUs of Vitamin D once a week, B12, Zinc and Iron daily. In 8 weeks I am going to be re-tested and see how I feel. If I do not have major improvement by then, my doc wants to put me on Cymbalta. I have been on this once before and it did not agree with me, but I am willing to give it another shot.

    I take one day at a time...if I feel good enough to exercise I do, and if I don't then that is ok. I closely monitor what I eat so i am at a deficit every day. That way if I can't exercise at least I am not gaining.

    Although I wish I had something with a cure, I am so thankful to finally have a name for the monster that has controlled my life for so long.
  • Leigh2778
    Leigh2778 Posts: 57 Member
    Just found this thread as I was searching for info on diet/exercise and fibro...I am not officially diagnosed with fibromyalgia. I've battled migraines for years and finally saw a new neurologist, who also asked about the symptoms of fibromyalgia. While my pain is nowhere near as bad as what some of you describe, there are days when it hurts like hell. Prior to my doctor's mention of fibro, I just assumed it was my weight. I am taking gabapentin for migraines and she said that is taken a lot for fibromyalgia, as well. Like I said, I didn't get an official diagnosis, but she stated that I had a "fibromyalgia flare", whatever that means.
    Anyway, her suggestions include eating better and exercising, to lose weight. I would love to. It HURTS to exercise. Even walking, some days, is so fricking painful, I don't know what to do. I've been doing more and more research and have found that people recommend a clean(er) diet and I've been thinking about trying that out. I happen to eat to deal with most of my emotions, so that's another hurdle I have to jump. Anyway...thanks for all the info and personal stories ya'll shared. Very informative and inspiring! :)
  • hotmimi62
    hotmimi62 Posts: 1
    I have had fibromyalgia for over thirty years. The first 10 years I was in remission of sorts. I am way too fat so I am trying to change my diet so that I can lose weight. I also need to go to the Y and take water aerobics. I am trying to help myself but it is very hard at my age. I am interested in hearing from anyone that has this malady and even if you have not been diagnosed. The way to find out if you have it is to go to a Rheumatologist..
  • starlikedolly
    starlikedolly Posts: 71 Member
    I've had a fibromyalgia dx for three years, but I reckon I've had the condition since I was a teenager. I binge ate to deal with the pain, and here I am. With a hundred pounds to lose.

    I'm determined to get my weight down this time, if only so the medical profession will take me seriously!
  • EricaLynn813
    EricaLynn813 Posts: 35 Member
    I have been dealing with my fibromyalgia for 3 1/2 years now and I was so tired of seeing different docs for it that I have finally given up my pcd put me on savella and that has been the only thing that helps but I hate taking meds so I only take when i have a flare up and since i stop taking all the other meds they had me on I feel more like a human than a zombie. Now my main focus is to drop some weight.
  • lachivis
    lachivis Posts: 43 Member
    I also have been diagnosed with fibromyalgia and chronic fatigue syndrome about 5 years ago. I had a couple of good years in between and then the pain came back with a vengeance 6 months ago. I'm currently taking meds for the last month because the pain and the tossing and turning from pain was keeping me up at night. They do seem to help me a little bit especially with sleeping, but everyone is different. I just restarted MFP today because I need to lose a serious amount of weight. I'm currently researching how to feel better because I don't want to rely on the meds for a long time. For some people the dosage helps at first and then you end up with the doctor prescribing a higher dosage and then you get the horrible side effects,no thank you. I'm glad to come across this thread, nobody in my family and friends have this, so it's hard to explain why I feel the way I do. To everyone that posted, feel free to add me as a MFP friend :) stay strong and try your best.
  • Drop_it_Like_Its_Hawt
    Drop_it_Like_Its_Hawt Posts: 226 Member
    My mother has fibromyalgia, and gets very frustrated by how limited her physical activity is getting, especially as she gets older. She does go to the pool weekly, though, since that's an extremely low-impact non-contact form of exercise. On her better days she goes for walks, too, at a very leisurely pace. Consistency over intensity, she says.
  • alliwithaneye
    alliwithaneye Posts: 163 Member
    Glad to see I'm not the only young person dealing with this. I was diagnosed at 13 and have been in chronic pain ever since and I'm 27 now. I don't remember what it's like not to have pain. I did finally find a doctor last year that has been able to help me somewhat with prescribing me Tramadol that I take every 6hrs... otherwise I can barely move and that is impossible with a 1 year old running around me. I also suffer from Degenerative Disc Disease, IBS, Gastroparesis, Severe migraines, stomach migraines, depression and anxiety... pretty sure most of that besides the DDD is tied into the Fibro though. They tried Lyrica with me around Christmas last year and it made me so tired I could barely stay awake during the day so I quickly came off of that. So far I have found a complete vegan diet has helped me tremendously (had been a veggie since birth but cutting out that dairy seemed to help). If any one of you who is suffering with this would like a friend, please send me a message. It's not fun going through this alone...or without anyone who really understands.
  • csswim
    csswim Posts: 2 Member
    I am having a horrible flare-up of Fibro and RA. We have had continuous severe storms for over 2 wks. It has been 12 days since i've done anything but lay on the couch. (can't get up the steps to sleep in bed). My feet, toes, hands and fingers hurt so much that I can barely walk around in the house or grip to hold anything. Right now I'm living on Vicodin 24/7. I am up all night, (even tho I am exhausted I just can't sleep)then I fall asleep about 6am and sleep til about 2pm. I had lost 22 pounds when I first started MFP in May 2012, but now I haved gained 24 pounds, because I just don't care. I'm tired of asking my friends to help me(although they are awesome, as is my husband) I am using Methotrexate inj every week, Vit D 50,000IU weekly, folic acid and Celexa, all for RA. I know exercise and diet are key to feeling better, but it seems so impossible right now.How can I break this flare? I was diagnosed with Fibromyalgia in Sept 2011. I also have Rheumatoid arthritis that was diagnosed Mar 2010, which I use Methotrexate inj every week. I had 4 attacks of pancreatitis in 2011 of unknown cause. I have been in the hospital 5 times, 1 week at a time in the past year. I also stopped working after short term disability ended in Sept. I was relatively healthy (except overweight) until a sudden severe gallbladder attack in Nov 2009. I had to have emergency surgery and was on high doses of antibiotics for a month due to severe infection in the gallbladder. This is when I feel like my body just started to decline. I know I am in a funk right now, so I'm venting. Not my normal up beat attitude. Thanks for listening.
  • I am a 19 year old female and got diagnosed with fibromyalgia today. I've been positive all day because I saw how worried my boyfriend was when I told him what the doctor said, but honestly I'm terrified. My mother is over weight and addicted to narcotics because of her fibro. I remember growing up she couldn't do a lot of the things that other moms could because of the disease. I see how much pain she is in everyday and I am terrified to end up like that. Right now I am only experiencing extreme muscle pain in my arms. I've always had back and neck pain too, but always associated that with the fact that I am a little "top heavy" if you get my drift. My doctor prescribed flexerill. I haven't had to take it yet because I took a vicodin that I had left over from when I got my wisdom teeth removed.

    I've always been fatigued and achy, but I also have chronic anemia. The extreme pain only started about a month ago. Does it keep getting worse? What are the best ways to suppress the pain without narcotics? I don't want to be dependent on them to function.
    I just have so many questions. My mom was diagnosed when she was pregnant with me (she was 30) so I always assumed that if I did have it I wouldn't get symptoms until later in life.
  • knittnponder
    knittnponder Posts: 1,953 Member
    I have had FM for roughly five years and I also don't have insurance. About a year and a half ago my oldest daughter was having some issues so we did some food eliminating to see if something she was eating was the issue. First we took dairy out for a few weeks and saw no change. When we added it back in it still didn't have any noticeable impact on her symptoms so we decided that wasn't it. Then we cut out gluten and it was like a light switch had flipped for her! Her skin cleared, her fatigue lessened, the dark circles under her eyes went away... it was magical! Because she obviously needed to be gluten free the whole family here at home went gluten free as well.

    I didn't go strictly GF myself initially, choosing instead to hope that wasn't something I needed but eventually I decided to give it a go. I went completely gluten free and was amazed at how much better I felt. It wasn't a cure all but my overall pain is MUCH less, the rashes that I would always get on my hands especially went away, I slept better and I was less grumpy. Incidentally, I tried eating some gluten a couple of weeks ago and the rash came back immediately!

    The other things I've learned about myself and FM is that I can't eat any artificial sweeteners, not even a piece of gum! I looked into nightshade vegetables and while most of them don't bother me eating a potato will leave me whimpering on the couch in misery within an hour or two of eating it.

    I take a magnesium supplement and find that to be immensely helpful along with vitamin D. I cut out refined sugar and foods as much as possible but when I do indulge I can tell because I feel pretty crappy. I drink a green smoothie every day and those are so amazing for me that my family can tell when I haven't been drinking them.

    I'm not saying those things will be the same for you but it's worth looking into how you feel after eating certain things. Since you already keep a food journal here on MFP, try cutting out one food at a time for a few weeks and see how you feel. Then try adding it back in and again, see how you feel.
  • CrazyTrackLady
    CrazyTrackLady Posts: 1,337 Member
    hello, all. I had joint and muscle pain for years, and it was getting much worse, when I went to the doctor and asked to be evaluated for fibromyalgia, RA, Hypothyroidism and Lupus. Nothing was conclusive, but my RA factor was elevated to 23, indicating a full blown inflammatory response was going on somewhere in my body. I had no pressure points, no rash (but I did have eczema), and no swollen joints. My doctor wanted to test me again and send me to a RA doctor.

    I went off gluten, and three months later went back to get my blood drawn. My RA factor was back down to 14, my skin issues were gone, all my aches and pains were gone, my horrible PMS had disappeared, I was energetic, feeling great. AND, my cholesterol was down 40 pts in 3 months.

    I'm not a doctor, but I see the correlation between gluten intolerance and joint pains and aches. It worked for me, maybe you might see some relief?