Fibromyalgia and chronic Fatigue sufferers where are you?

Annalee - posted on 09/14/2009 ( 216 moms have responded )

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New to circle of moms and think this is awsome to be able to talk to others that have this problem. Please write to me and be in my circle. thanks Annalee

MOST HELPFUL POSTS

Takashi - posted on 09/15/2009

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I have been diagnosed with the chronic fatigue disorder and chronic pain disorder from the E.R. But I find i am having a hard time with my primary care doctor taking these things seriously. So I have been to 2 other doctors and they are just blowing me off as if it were all in my head! I hurt everyday all day. I am so tired to function is getting harder everyday but I push myself because I have 4 kids. My husband is a great help but he work 10 hour days. # of the kids are in school but I have a 2 yr. old home. I have tried naproxsen regiem and the doc says exersice reguarly to kepp the muscles moving,soaking in hot tubs to no relief! I feel your pain literally. Just wish I knew other options. Thanks for listening, Kesha I would love to hear your story and take on this terrible disorder. Thanks again

Suzanne - posted on 05/27/2013

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Hello Everyone! I am new to this site and after reading just the first page I immediately related to everyone's posts. I have been suffering with Chronic Pain for over 17 years. I actually always had pain as a child, migraines, leg pain, and sinus issues yet I just took some tylenol and basically just lived with it. However, when I got pregnant at 27 yrs old in my 5th month I suddenly couldn't sit without extreme pain all over but esp. in my lower back and shooting pains down my left leg. When I was in my 7th month I had to go on disability and was in bed for the remainder of my pregnancy. It was a nightmare!! My dr. kept assuring me that once I conceived my back pain would go away since it was most likely the baby laying on a nerve. So after dealing with EXTREME pain for 2 months I finally brought my beautiful baby girl into the world and thankfully she was in perfect health. But unfort; I was not. The pain did not go away and in fact actually got worse! To make a VERY long story short I have had 5 back surgeries, 2 were fusions and sadly I only kept getting worse and worse. I have an amazing husband of 21 years (been with him since I was 15 yrs old) who has had to deal with me constantly complaining, canceling plans, and never ending depression. I have basically been diagnosed with failed back syndrome which means I am screwed and just have to deal with my pain. I also have Fibro which so many ppl do not believe is a true illness and it upsets me to no end. I was so thankful that they finally had a commercial about it so that when I said what I had at least they heard the name before. No one can understand the mental pain that comes along with the constant physical pain. I take Lyrica, Zoloft, 100 mlg Fentyal Patch, Elavil, and for the breakthrough pain Percocet. I know it sounds like a lot of medication and believe me I have tried almost all the holistic treatments out there but sadly most haven't worked or they are so expensive I am unable to afford the treatment. My daughter is now 17 years old and unfort; she has had to suffer along side me watching me cry out in pain or crying that I have pain and also the constant guilt that I am not the Mom she would have chosen. Since I was unable to carry a child again......that's a whole other story and belongs on another site.....not only due to my overall pain but I had many ovarian cysts that I eventually got a partial hysterectomy but because God had other plans for my family. I didn't want my daughter to be an only child and my husband and I always planned on a big family. So we decided to adopt from Guatemala and we were blessed with our son in 2006! He just turned 7 yrs old and he even knows his Mommy is most likely in bed or laying down because of my pain. He tells me he is going to be a doctor when he grows up so he can fix me. I am sure you all understand how it feels to watch your family go out without you because you just cannot even fathom the thought of dealing with the pain and ruining their time. I have built up a lot of scar tissue so that alone does not help. I cannot have an MRI because an idiot doctor many years ago put a Spinal Cord Stimulator in my back and it didn't work because he misdiagnosed me; so when I was getting my 2nd fusion they tried to take out the leads but they were too immeshed around my spinal column. So basically there is nothing any dr can do except to help me live with the pain. I actually just tried a new method called SUA - stretching under Anesthesia last week. It is a 3 day procedure in an out patient surgical center and they put you in a twilight sleep and the chiropractor stretches every part of your body while you are completely relaxed. I was so excited since the first night I did feel a difference in my neck and it does have a 85% success rate so I felt I finally found my cure. I would be happy with even a slight change but after the 3rd one I felt worse and now I am right back to where I was! I hate relying on medication and am desperate to get off all my medication but I know right now that is not going to happen. I did however have my pain doctor lower my patch since I have been on it so long I feel it isn't even helping anymore. I just turned 45 this month and I am scared to death what kind of shape I will be in when I am 55 or older!!! I actually dream about pain because I even feel it in my sleep. I also have insomnia....this post is at 2:50 am...so when I do get some sleep it is at all different times of the day or night. It amazes me when I hear from people that they have no pain anywhere! I couldn't even imagine a life without pain and the way I am heading it seems like I won't have to! I wanted to finish my degree in Psychology yet I have a terrible memory and I know it has to do with not only the Fibro but also because all I do is constantly think about the damm pain I am in! When I try to explain my situation to people they look at me like I am crazy because my outside appearance doesn't look sick. I look actually healthy and since I have had to deal with pain for so long I know how to handle myself when I am out in public and put on a happy face. I feel like a failure even though rationally I know it is not my fault yet I am wasting away the best years of my life!! I am glad I found this site even though I wish it didn't exist! If it didn't exist then chronic pain wouldn't exist. I will of course pray for all of you and I pray one day the doctors can come up with something, anything, to help us rid our body of the never ending pain we have to endure. I would also love to know if anyone lives in Long Island NY since it would be interesting to compare doctors and treatments near me. Blessings to All!

Deborah - posted on 01/14/2013

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Just to let you know not all doctors are unsupportive of chronic fatigue and fibromyalgia sufferers. As a doctor myself I am aware of the difficulties you are all facing. For those of you that want information about fibro written by a doctor who has a great understanding of the illness check out my blog which has a link to a free PDF book abour fibromyalgia. Hope this helps.
http://www.nutritioneclinic.com/2012/08/...

Fawzia - posted on 10/21/2012

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Doctors,our Government and People around us don't even know what "CHRONIC PAIN ...CHRONIC ADVANCED FIBROMYALGIA AND CHRONIC FATIGUE IS " It is one thing to have just have PAIN ALL DAY ...WHY ?? because it stresses you right out and i wake up with spasms,jolts.numbness,bloody cramps is a killer,plus if you have major back problems that just adds more flames to the fire and it also brings on a seizure cause your body cannot handle the pain ....Well the worst is when they cannot diagnose you with anything they say you have chronic fibromyalgia and many suffer with fatigue and their symptoms just escalates so bad life is so miserable like not sleeping, cannot control your bladder (peeing on floor) + bowels daily,severe numbness when walking,sitting and back of your head,hands and feet and when laying down is the worst,migraines,effects your eye muscles,infections,fevers,it feels like you had the flu symptoms 100 times over,can't control reading news paper it falls every single or your handbag etc. Awe not able to do things like camping,going to beach,there games...The list just goes on and on ...but i had a major fall and i ended up having 7 disc protrusion,still have a groin hernia plus a have another one and sitting it puts so much pressure .it gives me so much pain in my pelvis and i scream with the shooting pains and my poor kids would run and try and help ....This will also help those who say they have fibromyalgia and such cause if doctors only did something in the first place maybe you wont end up with all the complications .. .....There is so much more but my body is so painful right now....i will make corrections tomorrow,good-night !!

Kim - posted on 04/11/2012

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I have both disorders and have just now after 6-7 years started to find a little bit of relief going to a pain management clinic. The thing about people with fms is our opiate receptors do not work like normal people. I NEVER feel "high" or euphoria taking my narcotic pain meds. My doctor already knows this and told me the pain will always be there, but the meds will lessen it. He understands that with fms the meds need to be changed at least every other month. The thing that REALLY helps me is the muscle relaxer. Many find relief with neurontin, cymbalta, savella or lyrica. Unfortunately I am unable to take those meds, they make me very emotional. I do not like "head meds" and I believe stress, not depression causes the flare ups in me. So for me I take a narcotic, muscle relaxer, and mobic. I am still struggling, but I just started going to the clinic last month, so they start small on the meds. Don't let a family doctor take care of you, most know old info on the subject. I find with narcotic pain meds and the muscle relaxer I actually have more energy, because the pain is not constantly pulling me down. If you can afford it, go to a real pain doctor because most of them deal with this daily, and are up to date on the subject. My pain was / is so bad some times I think maybe I have something really bad and have a short time left. I did not mention this to him, but he mentioned to me a lot of people with debilitating fms and cfs often tell him this. I was relieved I was not the only one. Good luck, this is a terrible thing to have and so many people do not understand what we go through. Stay positive and stick with finding a doctor that understands.

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Carron - posted on 05/30/2013

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I have done the same - cut out everything nice and just pure foods water and vitamins. Unable to walk in Jan and now walking and swimming although slow and not for long - getting there! The guilt of missing out on family life all these years is the worst.....
I believe my diagnosis to be wrong and Lyme Disease but Dr's dismiss it as bloods negative. I've done my research and I had bullseye rash (ringworm!?) 35 years ago and all the symptoms since then of Lyme or MS but sure it's Lyme as husband had tick in neck 8 years ago and he is going the same way as me with pain, memory & fluctuating vision!!!!! :(

Tracy - posted on 05/21/2013

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I just was diagnosed with fibromyalgia from a neurologist. I have been experiencing pain symptoms for awhile though. I was prescribed gabapentin 300 mg 3x per day. I have been taking it for a month now. I feel really depressed and anxious. Has anyone experienced this while taking it? Or is this just part of fibro? I was already taking Paxil and Xanex a low dose in the evening because my husband passed away suddenly. I also read trauma may result in fibro. Interesting...I am working PT right now and I have trouble even staying awake or energized. I had to go back to work because financially I needed to as a single mom. I do receive support loss benefits from social security. I was told by a disability attorney that if I was approved disability that they may take away our support loss benefits. Is this true? Could they do that? Has anyone else experienced this..? I would love your insight:) Struggle everyday with this I get bad neuropathy and pain in my legs was terrible yesterday...:(

Brooke - posted on 03/14/2013

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Your post took the words out of my mouth. I have severe FMG and nerve damage down both legs and the right side of my neck. I feel so guilty all of the time because I can't make plans with my kids and husband because I don't know how I will feel that day. It's so hard just to do ANYTHING, I never imagined a trip to the store would feel like an impossible feat. feat Of course the constant guilt just makes everything worse......

Steph - posted on 03/05/2013

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I have been in many of your shoes....and am sooo thankful to say that I am 98% better. I was diagnosed with FM but refused to take the meds until I found out the "WHY". Believe me I heard people talk about nutrition, eat healthier....ect. I was willing to try anything before getting on meds for the rest of my life. I had arthritis, muscle cramps/sore, sinus problems, colds that would last forever...when I woke up in the morning I felt like I was 90 yrs old...and at the time I was 35yrs old. So the reason why our immune systems are attacking ourselves is because our intestines are leaking food products into our blood stream...aka leaky gut. I didnt' have bowel problems, the only thing I knew was that milk/cream hurt my tummy so I avoided it for the most part. But that's exactly what it was. I got off the gluten, any processed foods, very little sugar, dairy products..and Im feeling great. If you have nothing to lose try it. I've made it my mission to keep researching more info on our food industry. I made a lifestyle change, and realized that slice of pizza is not worth my health anymore. No soda, no fake sugar products. If you need ideas as to what to eat i'd be happy to help. Good luck and good health to all!

Susan - posted on 02/17/2013

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I have taken myself off of the narcotics for good. It only took me three months to go from barely needing them to taking a full day's dose at once and STILL not getting any relief. My husband is totally disabled, and we homeschool two of our three kids, so it's hard. But not nearly as hard as this last week or so has been, getting off those drugs. I wish there was something else, but for now, I'd rather hurt.

Lisa - posted on 02/09/2013

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loving the sites new lay out, im feeling so much better since i started taking vit d aling with other vitamins and my meds.....just trying to get nate the right help ... he still having meltdowns ...just got slapped in the face and called all kind of B names sigh...but im not giving up on him.....hes said sorry mama...

Susan - posted on 02/06/2013

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To Christine Heiner

Look up Adrenal Fatigue Syndrome. If you are under moderate to large amounts of stress for long periods of time, your adrenal glands will begin to shut down. The thyroid produces cortisol (I think that's what it's called) to make up for the lack of adrenaline, and that produces inflammation in the joints.

Susan - posted on 02/06/2013

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Where am I?

Why, in bed, of course!!

At least, that's where I want to be. All the time.

LeeBO - posted on 01/26/2013

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Hi Annalee, I have fibromyalgia and migrains, and Constant health issues I'd love to get in touch with you.

Julie - posted on 01/15/2013

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BTW, my neighbor just started LAZAR TREATMENTS for her Fibromyalgia and she is having good results. Anyone else tried this? I believe it is a fairly new approach.

Julie - posted on 01/15/2013

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Looks like PLENTY of women responding! No surprise here...I have a liver disorder called "Gilbert Syndrome" chronic fatigue, dehydration, abdominal pain, and depression are all side effects. I have learned over MANY years how to manage it, however episode do still occur. IF you have not been given enough advice (HA) I am willing to share what works for me. LMK and feel better soon!

Lisa - posted on 01/03/2013

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im loving this site i have fibromyalgia will find out for sure on jan 9th....and my son is austic...PDD-NOS its tough but we mangage and im also single with alot of outside supports....like now he just got home and is eatting like a cow (meds) and i just wanna rest but i keep going..

Lucy - posted on 10/20/2012

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I suffer with me and fibromyalgia v bad for just over four years. Single parent of four year old daughter. Work part time. Take pregabalin and tramadol and co-codamol and citalopram anti-depressants. In alot of pain head to toe inc severe headaches andmigraines. V bad exhaustion. Cognitive dysfunction. Overheat all the time. Alot of dizziness and balance probs plus some numbness and pins n needles and tingling. Muscle weakness. Spatial awareness probs. Plus much more!!!! Im in mkt harborough, leicestershire uk. Xx

Jacqueline - posted on 10/20/2012

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hi annalee. havnt been officially diagnosed but i am so tired all the time and never have any motivation or ambition to do anything. I am on meds for depression and anxiety, amoungst other things. I also have 5 children. I have no support except for my poor, tired husband. You?

Adriene - posted on 10/18/2012

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has anyone heard of polymyalgia thats what I have been diagnosed with whats the difference between fibro and poly does anyone know?

Fawzia - posted on 10/14/2012

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Boy do i ever suffer with Chronic Pain and Advanced Chronic Fibromyalgia all because a hard fall i had at work in 1995 ...I have many injuries and seizures and just being in pain i wish my doctors can feel my pain that i have...I was hit by a car almost died but went back to work the next year that was in 74 all my 4 kids i had by c-section cause of both sides fractured pelivs due to mvaccident and had two other major surgeries ....

That fall i had at work, i could not recover and i kept going to doctors and many times chased me away and i would have mild seizures and full blown but because i was on W.C.B some specialist refuse to examine me cause it came to a paint my doctor said i had a disc protrusion/bulging and i ended having 7 and until i saw Dr.Spencer Lui he was so damn mad that he said that the pain clinic was a bunch of idiots cause they have to know where the pain is coming from and it was my Pelvis i re-broke it and had almost 150 cortisone since 1995 ....Well it was too late my pain was just unbelievable and i would constantly scream and cry every day my kids and parents would see me suffer and would be bed ridden 2-3 months when i could not go to doctors my family would go for me .....



Today i cannot control my bladder daily and bowels getting there that i mite use depends ..

My problem is so complex that some doctors say it's hard to treat me ....



I still have hernia from fall and suppose to go for knee surgery and now he says no and i get jolts and spasms and i wish i can have a four hour sleep that would be a miracle..

I had another fall last month and it's been hell and my body is so stiff when i just sit or lay to long ....

I have so much numbness and specially on hard surface i would drag my leg and that's my left my right is deformed due to my pelvis ...

I really wish there was a very good doctor or specialist in Vancouver,B.C. and yes i have been to the pain clinic and i have to go by doctors orders and they put me on meds that mess up my heart and brain and i would tell them try it first some nearly killed me have allergies and my doctor said he has run out of option and i will be 55 soon and my health is deteriorating ....

You think you live in a big Country there will be help but no my doctor has tried and here it also takes for ever to see a specialist ......

Please can you help,thank you ,Fawz

Bronte - posted on 09/23/2012

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Hi , I was diagnosed with Fibromyalgia 22 years ago. I also suffer with chronic fatigue, chronic migraines, neck neurological pain and sleep apnea. I never usually talk about it as I feel stupid and don't want to bore people. Plus I find most healthy people don't understand and doubt me so I've become a bit reclusive.. I've also developed depression and anxiety because of these health problems. It's so hard to plan anything and canceling things all the time I feel so bad. That's why I wonder why people doubt so much - who would choose this life of pain for goodness sake. It's stopped me skiing and playin g tennis which I adored, prevented me going on holidays because I cannot tolerate sitting for hours in a car or plane etc But I'm delighted to find this site with other people like me to talk to.

Emily - posted on 06/02/2012

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I'm new to Circle of Moms, but not new to Fibromyalgia. I have had it for over ten years, although it's only be diagnosed for 8 years. I would love to have people join my circle and talk with me. Thanks.

Vikki - posted on 05/22/2012

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I was diagnosed with Fibro about a year ago, on top of existing long term clinical depression and PCOs... Life has got ten times harder.
Now that my beautiful boy is 3yrs old, his behaviour has become really foul, exacerbating things!
I guess I don't really have much advice as am just about hanging in there by my fingernails as it is! But I can offer support and assure you that there are many of us ladies, struggling on and we all need to stick together!! xx

Monique - posted on 05/08/2012

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I have been diagnosed with lupus attacking my liver and fibromyalgia. Being a mom with these conditions is hard, on top of the hardest job in the world ... being a mom! I'm tired all day, it feels like I never get enough sleep and the worst is the pain. I use to feel horrible, mostly because it took so long to figure out what was wrong. but for the last year I have been educating myself, while managing my illness.

I just finished reading a book that was so helpful : Chronic fatigue, fibromyalgia & environmental illness by Burton Goldberg and 26 other doctors. I found natural ways to start getting my life back. Im also prescribed the fentanal patch. (I wouldnt advise anyone to take narcotic PILLS because this condition is forever so your body will eventually need more and more and it doesnt last. ) the patch is amazing It helps with the pain and does wonders.

I still have my bad days, but i believe support, knowledge and maintaining is the best way!!

its been along road and i know how it feels when doctors keep brushing you off... KEEP INSISTING... because you could have a life threatening condition. Your body is telling you something.. dont ignore

Darla - posted on 04/18/2012

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It's okay to be a downer sometimes...we all feel it at one point of time. I am truly sorry for your loss...I can't think of a harder situation than that of losing a child. Be sure to stay on your doctors to get to the root cause(s) of what all is wrong. I posted about myself 2 days ago, and I can say I totally understand how you are feeling...I worked full time up to January. I am at a point of no return now...lol...Try to find humor where you can and please know that you are not alone. You have support here. You did not say if your loved ones support you when it comes to your illnessess. Hang in there! Take care and chat soon...toodles..

Darla

Elaine - posted on 04/18/2012

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here I am...in Minnesota...achey...cranky...tired...I was diagnosed with SLE for more than a decade then wonder of wonders my rheumatologist changed his mind and told me it was just fibromyalgia...loose some weight (yeah that's nice) 50 pounds or more...lol...and here are some nifty opiods...pat on my achey back and off I went...so here I am currently on Savella which kinda works and now 3 weeks of steroids while my current doctor tries to decide if the muscle pain in my arms and hands is Lyme disease...some thing thyroid or just there with no explanation...sigh...I work full time...have a 21 year old autistic daughter who is too disabled for a job much less her own place...and I have my 2 grandchildren ages 7 years (also autistic) and 5 months 5 nights a week so their mom can work graveyard shift...so between the multiple therapies for the 2 with autism a baby who doesn't like sleeping...a new husband of less than a year...and me wanting to actually wanting to accomplish something on the many quilting projects I have...I'm a bit wiped out...heavy sigh...plus today is my middle daughter's birthday she died a month after she was born...not a good day to try to be an active part of society... :( wow I'm a total downer...sorry 'bout that

Darla - posted on 04/16/2012

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Hello,

My name is Darla and I suffer from both Fibro and Chronic Fatigue as well as several other illnesses that are invisible. This is my story....My Illnesses



About fifteen years ago[around 1998], I was an highly qualified teacher, who was doing staff development, training in special projects, and had some of the highest test scores around. I stayed as late as needed to help students, putting my family off, and not taking time for myself. There was an unbalance to my life. During all this, I first had my hypothyroidism diagnoised. I was put on thyroid medication. Also during this time I began having panic attacks so I was put on antidepressant. Then I had ischemic colitis I was put on a bland diet and lost some weight. My doctor said I had a lazy esphosgus and had to take very small bites. I would choke easily. I was also diagnoised with acid reflux. Then the disc between my neck and upper back blew and I had to have surgery. I was off work for three months I tried to find someone that would diagnois me with fibromyalgia. I had researched the syndrome and knew that I fit all the criteria, however it took me another four years to find the doctor that I think of as a friend. My Rheumatoid doctor, diagnoised me with fibromyalgia, restless leg syndrome, and chronic fatigue syndrome. This was in 2002-2003. The next year, then the neurocardiogenic syncope hit. In 2005, I had to go on medical leave because it was not safe to be in class and fainting. It took my cardiologist a year to determine what the cause was to my fainting all the time. I would go down about 5 times a day. Each time I went down, there was a chance I would not get back up. In 2006, almost 7 years to the date, I had to have a pacemaker put in. That pacemaker stopped me from fainting. The fall of 2006 I went back to work. I applied for a new position, Literacy Coach. I got that position and was in it for two years before the moeny ran out and they closed the position. While I was coaching teachers, I was diagnoised with diabetes. Then I had been diagnoised with gastroneuropathy and neuropathy of my hands and feet. I then went back into the classroom and that is when I began having difficulty with my job. I had never had a bad preformance review. The next year I did. Work has gone downhill ever since then. I am now on admin leave and trying to come to some resolution that doesn't mean firing me. I cannot say more than that, since the case is still open. I can say that my fibroymyalgia is worse from the last four years and I have been having really bad dizzy spells since then too. My health deterioated during the last four years and I am adjusting to not being able to do things I used to with ease. Such as, spelling, remembering things, being focused, etc...



I am so sorry this is long...but I wanted you to have a clear picture of what I deal with daily. I have a blog at: http://akemisheartmindsoul.blogspot.com/

Scientist feel that fibro can be triggered by a traumatic event and I have had several that occured and I think the scientist are right. Any time one has to stuff their feelings it eventually has to manifest itself, and I believe it does so physically.





Take care everyone!

Darla

Bernadette - posted on 03/22/2012

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melody, i had a total hyster(left 1 ovary) 6 years ago now. the best thing i ever did, not only for the fibroid pain and constant bleeding, but for the fibro. I have RA and fibro, and was having cyclical flares that seemed to be related to hormones.After I was able to go back on my Ra meds and I had recovered from the surgery and the huge flare, no meds for a moth beforehand caused....i was amazed ,I had very little fibro. Even now 6 years later, i have to be very run down,stressed, usually from being run off my feet or have an infection to feel fibro pain.I do however have some lingering fatigue, though this is minor compared to pre hyster. good lick melody i hopeyou have the same changes i did.

Marcy - posted on 03/22/2012

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Hi! I would love to chat and compare stuff with ya! I have Fibro and Myofascial Pain Syndrome .. basically I have chronic pain and fatigue.



I have a blog, in which I write about chronic pain, family stuff, pop culture, healthy eating, etc.



http://momentswithmarcy.com/



Today I wrote about muscle manipulation therapy:



http://momentswithmarcy.com/2012/03/22/h...



Looking forward to chatting with more moms with chronic pain! We are strong, awesome women!

Amanda - posted on 03/07/2012

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hello Melody Try not to worry about your hysterectomy op I had a total abdominal hysterectomy in January this year I am now 6wks after my op and Im aching but not anymore than I was before the op I was suffering with very swollen fibroids one of them was the size of a large orange and I was bleeding all the time for over 6 months and only option left was to take everything away to stop the bleeding and I am now looking forward to summer, white trousers and white short and not a worry about bleeding its great :)



Good luck with your op hunnie xx

Mrs. - posted on 03/06/2012

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I've posted here before, but I see it is being updated with new folks now.



You are not alone, there are many, many of us out there who suffer and are mothers too.



I have endo, fibro, have had VVS (though it is much better now), been diagnosed with IC and general chronic pelvic pain. I've also dealt with PPD since my daughter was born. It is a lot, but I think I cope well considering and have tried to keep my sense of humour.



Just wanted to tell you, I heard you tonight and you aren't the only ones out there trying to make it all work while dealing with the pain.



Thinking of you all.

Melody - posted on 03/06/2012

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Wow Amanda that is alot for one body to go through, I know the feeling though about to file for disability because I can't hold a full time job anymore... Hell even getting up to try and clean my kitchen has started to come unbearable to me. Not to mention I'm having a partial hysterectomy done this week which is a last resort to stop me from bleeding. Cause ontop of just getting diagnosed with Fibromyalgia, and alreadying having IBS, Vulvadynia and IC and Gastroparesis. If i don't have the surgery I could end up bleeding to death. I never thought in a million years that I would be facing this =( I'm having a flare up right now and can't stop crying because of not just the pain but everything going on around me! They havn't even started me on the gabpementin yet. I hope things ease down a bit for you though



Hugs to all Of you

Amanda - posted on 03/06/2012

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Hello everyone :) Im from Leicestershire , uk

I have fibro, cfs, thyroid problems , heart problems, slipped disc , osteoarthritis, migraines, anxiety and depression and Im suffering with bad flare up at the moment. I take morphine, gabapentin and loads more medication on a daily basis.I walk with a stick, crutches or go in my wheelchair. Today I can hardly move and its all thanks to sitting in the job centre yesterday ... The lady was telling me I was fit enough to find work even with all my health problems .. I kept repeating myself to her but she didn't listern to me .. Its very hard to get people to understand how much pain I suffer and how just by doing 20 minutes sitting in her chair left me so stiff and in so much pain its unbearable, I left there in tears.. The lady kept saying I could do 4 hrs a day yeh right #i'd be in hospital after the first day but NO she was acting like I was making this up...Im now left with 5 weeks to find a course or leaflets to a course to show her when I go back to see her in 5 wks time I really don't know what to do :(



hugs xx

Amanda

Victoria - posted on 03/04/2012

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Hiya Annalee,

I have quite a few health problems stemming from having a rare form of cancer the first time was when I was five and have lived with chronic pain ever since and CFS and a heart condition, a thyroid disfunction, osteoporosis, the doctors also now think that I may have fibro too like my mum.

I was always told that I would never be abe to have children but I have two beautiful daughters. They are very good with my health and help me loads!

We have always made a poin of being very honest and open with them about everything, they say that they find it easier to handle things when they are told what is going on and is explained to them! That way they find it less scary when I have flare ups!

I belong to a couple of support groups on facebook and it has really helped to talk to other people in the same situation and we help each other with advice and support!

I would very much like to hear your story and become friends if you would like to!!

Love from Victoria

xxxxxxxxxxxx

Vanessa - posted on 03/01/2012

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I have fibromyalgia, arthritis in my back, bulging discs, torn rotator cuff and much more! Plus a chronically ill child. I've been through the docs blowing you off, it's madening to say the least!!

Amber - posted on 02/26/2012

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I am 24 and have a five year old who isn't in school yet and each mornin she takes like twenty minutes to get me out of bed. I am in pain going to sleep very uncomfy and mind on overdrive but in the am if I slept on my left side I cannot extend my left elbow or knee due to curling up and it takes a while for the pain and stiffness to go away. I'm exhausted all the time and moody and my boyfriend just doesn't get it. Like some Of u when I talk about it people look at me like I'm Lying or whatever but I seriously don't want to be like this anymore. I only take Motrin and I worry about my liver and stomach so I really hate it.. I honestly do not know how to join circles on here . I'm new so any advice would be helpful. If I fall asleep I can sleep all day literally and wake up tired. I'm trying to excersise more but the cold hurts my joints do bad escpecially my wrists I can't even bike ride . :( I feel alone and I don't know what I can do to feel better and happy.

Teresa - posted on 01/23/2012

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I have been useing a tens unit to kill my pian and it has been working a lot better than any pian killers I have taken.The one I am useing is Harry's I am going talk with my docor next month and get my own own.To me it better that putting pain killer's in your body.so my pain been at a 4 lately..hope you are all in a good mood and doing great. God Bless

Teresa - posted on 01/23/2012

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Chantal,

You are AWESOME! Thanks for posting this. I don't currently have the issues that people talk about here. Years ago, I was labeled with Fibro. I had all sorts of issues. I went to an alternative health professional and learned about a technique called NAET which is an allergy elimination technique. I got over my issues. It was also due to a lot of food intolerances that I did not even know I had. I was amazed at the technique. I had quit my corporate job and was a massage therapist at the time. The practitioner was needing help, so I began working for her. Worked there for 8 plus years and what I experienced was life changing. Clients would come in with all sorts of diagnosis, traditional medicine didn't seem to help... as with me. It changed how I view healthcare.

I totally agree with what you are saying. I never gave up the wheat, gluten, etc. I did get treated for it and instantly stopped having a lot of symptoms, especially with my sinuses. You are so right on the cleaning chemicals too. There are so many toxins in and around us. I was so taken with what I learned, I went in search for more. I also came upon a technique called TAT, Tapas Acupressure Technique. The lady that invented the technique was a former NAET practitioner. TAT works on all sorts of things including allergies. You can download the instructions for free on her website. I was so taken with this technique, I became a practitioner myself. It's easy to learn. SImilar to other techniques out there like NAET, EFT, etc, but there is the aspect that you are asking God for the healing.

Check it out if you wish. Thank you so much again for your post! I've been in these communities for a while. It saddens me because it seems like there are so many people out there hurting, but are very locked into their beliefs. Traditional doctors did not work for me, maybe they do for others. I see so many complaints on these posts. I wish some of these people would just take a look at other possibilities. I hope your post helps, I hope people become more aware of what is in their foods, clothing, cleaning supplies, lawn care, etc. I even treat my animals with the technique and have become more aware of what I feed them.

I'm so glad you were able to help your son and yourself. If you would ever like to chat offline, my email is teresa7860@comcast.net.

My heart goes out to all of those who post here. I pray that they find answers to their issues.

Chantal - posted on 01/23/2012

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Hi I have a long story but I will try to make it short...25 yrs ago I had a car accident of which a lady pulled out in front of me and my car swerved. I ended up getting flung out of my car at 55 miles/hr. No broken bones but really bad body lash. I started to have symptoms shortly thereafter. Anyway I went to everykind of doctrs..physical, neuro, ortho, pain...and a outpatient program for pain....I use to be bed bound, I would walk and fall over at times.. I would sway when I stood in one place for any length of time. I would pray for a answer but found info that didn't get to the cause of Fibro. So last yr I took my son with Adhd/sensory problems to a biomedical doctor. I found out he had like 12 major food intolerances wheat, milk, tomatoes, potatoes peanuts,soy etc...so I was advized to get my son on a gluten free/ milk free diet. and I put him on a very strict diet. Well I decided because of research to go gluten free/milk free/sugarfree....And it was LIFE changing. My fibro fog I've had for 24 yrs gone! also I don't have the neuro problems I had. Also the big knotty muscles on my body are almost normal. I became a master gardner because I believe we are what we eat . all the genetically pesticide laden foods are killing us!!!look at the epidemic we are having of chronic diseases and cancer...I am not trying to sell anything except please try to go gluten free be careful what you eat. My son also has progressed amazingly! He feels better too!! you might be saying to yourself ok well good for you( I use to say that) but I am living testimony you can get better. I still have pain but its so much more manegible. I am careful about food,stress and chemicals...I use to feel I had no life just pain was on my mind. I hope I can encourage you..it takes 6 months to get gluten out of your system.but I saw difference within days. I have a friend who got better modifying her diet. she has R arthritis very bad and she looks like a million bucks now.Also be careful of the cleaning products you use.Many people die each year from indoor pollution. I encourage you to take your health back and God bless you...sincerely I care

Jamie - posted on 01/18/2012

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Can anyone describe Fibro pain to me? I've had weird symptoms that my doctors don't take seriously because my lab work is normal.



I have googled the symptoms, but I want a persona actually suffering from it to describe it in their own words. That would be really helpful to me!



Also I have on and off weird twitching for two years and I've heard fibro and CF suffers sometimes get it too. It's weird and it comes and go. My OB thinks it is my hormones being out of whack from breastfeeding.

Fern - posted on 01/18/2012

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Jacqueline have you been diagnosed, because this sounds like chronic fatigue! There are treatments and things that you can do to fight it, but it's difficult. Finding support and understanding is very important.

Fern - posted on 01/18/2012

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Jennifer your description of your symptoms sounds lie SAD (seasonal affective disorder). Many of us have symptoms that are worse in the winter months due to lack of sunshine. There are things you can do for it. The best thing is to use full spectrum light bulbs in your home. These are bulbs that give you similar light to the rays from the sun and help your body to combat fatigue, pain, and sadness. You used to have to buy or make special lights for this, but now you can buy GE Reveal light bulbs. These are full spectrum bulbs. I put them all over my house and use them year round to combat the symptoms of SAD.

Jacqueline - posted on 01/12/2012

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Hi, I am new as well and have so many issues. I would just love to talk to someone with the same problems. I cannot stay awake during the day and i have a 3 year old. I have to fight to get any ambition or motivation to do anything at all. I dont even want to take showers.. Now its so bad that I dont even want to leave my house. I also have 4 other children. The guilt is just incredible and I need some friends going through the same thing to talk too. I hope i get some replies as well.

[deleted account]

I have had chronic fatigue at least twice in my life (44 yrs) the first time in my 20s after having viral pericarditis and I saw a psychiatrist and took Venlafaxine. Recovered in 7 months and went back to work full time, played sports etc. it didn't flair up again until I was 35, when my first born was 14 months old. Again I saw a psychiatrist and took Venlafaxine. This episode was later diagnosed as post natal depression. I made a full recovery and went back to work and weaned myself off meds. I then had 2 miscarriages and 1 successful attempt at IUI. I recently had a nervous breakdown and was in hospital for 6 weeks, my history makes a lot more sense now. Trying to be perfect and super human and then burning out.

[deleted account]

I have had chronic fatigue at least twice in my life (44 yrs) the first time in my 20s after having viral pericarditis and I saw a psychiatrist and took Venlafaxine. Recovered in 7 months and went back to work full time, played sports etc. it didn't flair up again until I was 35, when my first born was 14 months old. Again I saw a psychiatrist and took Venlafaxine. This episode was later diagnosed as post natal depression. I made a full recovery and went back to work and weaned myself off meds. I then had 2 miscarriages and 1 successful attempt at IUI. I recently had a nervous breakdown and was in hospital for 6 weeks, my history makes a lot more sense now. Trying to be perfect and super human and then burning out.

Melody - posted on 01/04/2012

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Jennifer I'm the same way when it comes to the seasons changing , I feel that right after the summer and no medication because I'm feeling great during the summer. Thats when my biggest flare ups hit with my IBS and all the pain around me, with Everything I have . I keep having these back spasms n there horrible. :( I just try to breath through them. I completely understand what your talking about tho.

Kelly - posted on 01/03/2012

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Thats me! and much more. I dont get on here much I just happen to pop on today. I am on my fb all the time

Jennifer - posted on 01/01/2012

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I have noticed my symptoms appearing after the Summer ends. I ususally start crashing pretty hard by the end of October. Then I start adding supplements back into my routine, including Vitamin D among a trial of many others. I resist the urge to medicate through prescription unless I hit a wall after the supplements. So far, after fighting this issue year after year the supplement things seems to get me back on track, although it always seems to take a few months. Then I feel better, stop doing what helped and the cycle starts all over again!!!

Michele - posted on 12/29/2011

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I would love to be in your circle. :-) I have been diagnosed with Fibromyalgia, arthritis and degenerative disk disease after having a bad accident ten years ago. I think it would be great to have other moms who suffer from such illness(es) to be able to have a support system. Just because you are tired and/or in pain, doesn't stop you from still doing what you have to do as a mom and everything else! :-)

Melody - posted on 12/28/2011

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Thank you very much Andora, I'm trying to suck it up and remember that I can fight all of this but it gets very difficult at times For everything I am now on like 10 meds again n half the time don't even feel like they help me like there suppose to be doing.

Andora - posted on 12/28/2011

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Hi melody, sorry that you have felt the pain and isolation but am glad you found a group that you feel might be helpful. hang in there, everyday you are upright- you win!

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