Fibromyalgia and chronic Fatigue sufferers where are you?

Joanne - posted on 02/08/2010

I would really like to know why doctors are brushing me off. Fibro runs deep into my family and I suffer daily with arthritic pain on top of all the aches and pains and fatigue throughout my body. I tell the docs of my family history and instead of sending me to get fully diagnosed, they say "Oh you are a prime candidate to get this disorder" and then leave it at that. Who do I go see to find out if this really is the case for me? I was told, that since I am already on pain meds and anti inflammatory pills that there is probably nothing else they can do. It just makes me angry that they wont look into it further. How do you get these YOUNG doctors to send you to the proper specialists? and what specialist do you see? Hope someone has some answers because this is starting to drive me bonkers. Thanks..Joanne

Annalee - posted on 02/08/2010

Hi suzanne thanks for writing. this is an awesome web site. glad your here!!

Annalee - posted on 02/08/2010

Hello everyone!! When I started this thread I had no idea the response i would get. I love reading about all of you and your experiences. and feel sad that we have to go through them. Thanks for all the imput. keep it coming. Annalee

Annalee - posted on 02/08/2010

Hello everyone!! When I started this thread I had no idea the response i would get. I love reading about all of you and your experiences. and feel sad that we have to go through them. Thanks for all the imput. keep it coming. Annalee

Hannah - posted on 02/08/2010

Does anyone live near camberley in surrey as im 22 and have fibro and im on my own yes i have my partner but its not the same xxx

Fern - posted on 02/07/2010

Its great that Lyrica and Cymbalta is working for you, but it doesn't work that way for everyone. That's one of the most frustrating things about fibro is that everyone's symptoms vary and how they respond to treatment also varies. So what works for you might not work for me. Its trial and error. I can't take Cymbalta or Lyrica due to severe side effects and this is not unusual.

Brandi - posted on 02/06/2010

I would love to be your circle, it is so good to talk to other moms who have the same problems. So often those of us with fibro. just suffer insilence and hope it will all go away-but we know it won't, it will be good to talk to someone who is having the same problems.

Jay - posted on 02/06/2010

Takashi, I feel what you're going through. I had the same problem with many doctors before they I finally found the right one...who believed me! My primary is wonderful and supportive, but I asked her to refer me to a Rhumetologist to help me with my pain, and he was the answer to my prayers! He knows everything about CFS and Fibro and has helped me every step of the way. I would strongly suggest asking your primary to send you to a Rhuemy that works with these conditions.

Good luck and I hope this finds you feeling better!

Marie - posted on 02/03/2010

Has anyone found pain relief that is affordable? I have gotten used to just being in pain all the time, because without insurance I haven't been able to do anything about it. I just found an individual insurance, but have a waiting period before I can go to the doctor. Until then, I am having horrible flareups and want to be able to do something, so I can continue working.

Bonnie - posted on 02/02/2010

Hello to those living with Fibromyalgia and suffering pain...there are many forms of pain, and FM has multiple.(mental, physical, emotional) I was diagnosed back in 1986 at the montreal children's hospital...and yes, majority were told in those days...that it is all in your head...(most dr.s know better today luckily) so desperate to try anything back in 1986...i went for counseling and the psychiatrist/psychologist's told me that i was more sane then them. Sooooooo, i went through the next many years of suffering and research and seeing different dr.s and trying different pills. (EVERYONE suffers in a different way then others...we are all unique, so some things work for one person, but not for the next person...you must find YOUR OWN "combination" of reliefs/tips/meds.) With just over 20yrs of suffering, i can honestly say that the meds made things much worse...and that the only help i found that made decent improvements in my life, was through FIBROMYALGIA SUPPORT GROUPS that had other people suffering similarly to me. (There were none in my area that i could find, so i started my own with an add in the local paper.) 600 people called and i spoke with EVERY SINGLE ONE OF THEM. We traded information on tips, dr.s, exercise classes, meds, books, ...anything & everything. We met at the local church where they lent us a room once a month. We encouraged one another through the hard times...and I got many types of dr.s to come and give a speech on their field of medical support for FM. We learned alot.

Find a support group within your area and start from there...as you will be amazed what kind of time you can save by sharing your experiences amongst others suffering as well.

Note: I lived an active, productive life WITHOUT meds majority of the time these last 10yrs. ONLY muscle relaxant meds helped me, so i took them occasionally. Pain killers gave me life long stomach problems, and many other meds made me more fatigued.

***So I found the most help from support groups and naturopath to guide me the natural way. I found more relief by removing most of my mercury fillings in my teeth...then by eliminating SUGAR, ALCOHOL, PRESERVATIVES, CHEMICALS, (specially household cleaning products)...anything unnatural.*** (read ingredients) When i had muscle spasms, i took calcium/magnesium. THIS WORKED FOR ME...now you must find what combination works for you.

GOOD LUCK to everyone, and know that there is help/relief out there...it's just hard to find it. DON't GIVE UP. Go straight to the horses mouth and get in contact with others who may be able to help you in some way with their own personal experiences/contacts/tips on coping. I HOPE THIS LONG EMAIL HELPS AT LEAST ONE PERSON...and hopefully more.

Lucy - posted on 01/30/2010

I am 43 live in a town in South Leicestershire, England. I live with my partner and young daughter, Nadia, 18 months old. I work two days a week in an admin role in an office. I help as and when to look after my elderly disabled mother. I have Fibromyalgia and Chronic Fatigue Syndrome (plus ongoing mostly low level depression). I find life a real struggle and esp doing activities with Nadia and getting out and about with Nadia, plus a great deal with household chores and shopping. In addition hardly ever get to play groups or meet ups with people and to appointment because of the effort and energy involved plus pain involved and difficulty (alot) with child care. My partner works full time and is on shifts and this includes alternate weekends and bank holidays, etc.



Any tips, help, advice, signposting,etc... much appreciated. I do receive (just recently) low level DLA care element and Working Tax Credit (disability) element which are helpful but still struggle enormously financially month to month.



Blessings Lucy xx

Christy - posted on 01/30/2010

Hi everyone...I have never been diagnoised w/ CF, but I have Chronic pain, osteo arthritis, Degenterative Disc Disease (the cartilage between my disc's is shot) and some problems with the Disc's themselves, Sensory Motor Neuropathy...but after reading all these posts I think I need to check into the CF thing.....If I make it outta the bed to cook dinner, wash a load of clothes I think I am doing good....My hands and feet stay cold...to the point that they hurt, like to the bone kinda hurt...I am in a pain clinic, I take Kadian time released (morphine) 2 x's a day, lyrica 3 x's a day, zanaflex for the muscle spasms, 3 x's a day, lortab (which was just changed to something like norco b/c of the liver damage possibilities 6 x's a day, 2 topamax 2 x's a day and I take meds for my hypothyrodism, nexium and hormones .....I never have any energy....I have been depressed forever....and I felt like no one would ever understand.....so where do I go from here? I get some relief from pain, I have been in the pain clinic for about 4 years and am going thru steriod injections to my spine now, but the winter months are horrible, but i would like to be able to get up and clean house like a "normal" person and not have to drag myself out of the bed everday or be worn out and feel like crying just b/c i am so tired from going to the grocery store.....and sleep..?? whats that..I have taken ambien and ambien CR.....it doesnt work...I am lucky if I sleep 3 hours a night....Awake in Alabama...lol

Lynn - posted on 01/28/2010

Hi Takashi,

My doctor has me on a medication regimen that helps a lot. I take Gabapentin (generic Lyrica), Cymbalta, flexeril, and because I also suffer from anxiety and panic attacks, I take xanax. I also have migraines and take topomax and imitrix. I am only allowed to walk or to aqua aerobics in a heated pool, so I go to the Comfort Inn an Suites hotel and for $2.00/day I can use the pool, hot tub and treadmill. I go 3x/week. It really helps loosen up the muscles. In addition, you need to be on a regular sleep schedule in order to help your body get the right amount of rest. I take terazodone to help me get a deeper sleep so that my muscles totally relax and I'm not so sore in the mornings. I know that a lot of meds to have to take, but it really does help. I've had fibromyalgia for 20 years and just went on disability last year. It was approved 3 months after I applied for it. You really need to find the right doctor and demand that you be treated fairly and like a real person who knows what is wrong with you. Go on-line and find Fibro specialists in your area. Good luck!

Suzanne - posted on 01/27/2010

Hi, Annalee,I have fibro, RA, & chronic fatigue....doesn't seem like I get much done. With this cold spell coming in had to grab some groceries after getting our daughters retainer. We have to drive 30 miles to get anything. We have a filling station,PO, & the best little school (pre-K through 8th) in our town. I'm wiped out!! I like reading your tidbits. I'd love to be in your circle once I figure it out. God Bless & stay warm.

Suzanne

Suzanne - posted on 01/27/2010

Hi, Annalee,I have fibro, RA, & chronic fatigue....doesn't seem like I get much done. With this cold spell coming in had to grab some groceries after getting our daughters retainer. We have to drive 30 miles to get anything. We have a filling station,PO, & the best little school (pre-K through 8th) in our town. I'm wiped out!! I like reading your tidbits. I'd love to be in your circle once I figure it out. God Bless & stay warm.

Suzanne

Amanda - posted on 01/27/2010

I think what you wrote was brilliant its just how i feel and im doing it alone, im not sure if iv completely realised that i wont get better i keep thinking one day i will ride my bike again or go for a long walk but deep down im worried that once i accept my bad health it will get worse but i don't know how much more pain i could cope with. It brakes my heart that my kids have to see me in so much pain that i can hardly walk they shouldn't have to see that. Im 34 yrs old but feel 80..... as you say its nice to know im not alone there are others suffering just like me.. thankyou for what you wrote....

Amanda - posted on 01/27/2010

Hiya Annalee,
My name is Amanda i live in leicestershire in the uk. Im in constant pain i suffer from Fibromyalgia, Chronic fatigue syndrome and other illnesses. where do you live?
how long have you had Fibromyalgia ? iv had it for 2 years (diagnoised) 4 years ( undiagnoised) i have good days and bad days its bad at the moment i find it hard to get into bed at night then struggle to get out of bed to take my son to school in the morning.


Im a single mum to three boys but iv got a brilliant mum and dad, my mum has taken on the job of my ironing as i can't do it anymore.

At the moment im taking gabapentin for the fibromyalgia 4 tablets 3x a day then i have morphine patches 20mg and 10mg, i take heart medication and thyroid tablets and an antidepressant and when it gets really bad so i can't walk i have liquid morphine which helps alot . I kept going to see different specialists they did blood tests, xrays and M.R.I scans i felt like no one would believe me. ( i did wonder " is the pain in my head") because no one else can answer what it was.

I think the hardest things for me is accepting i can't do all the things i use to do and seeing my kids do the things i should be doing. oh and the pain....

Thankyou for listening to me moan if you ever need a good natter just send me a message
take carex

Lisa - posted on 01/27/2010

Marsha, I'm so glad you wrote in. I COMPLETELY understand what you're saying. And, it seems like others on this site do as well. I just joined too. Aside from the pain itself, there is nothing worse than the "look" from those who think you are a hypochondriac. It is almost as bad as the Dr.'s who treat you like you're a drug addict, when all we are trying to do is get through each day, one day at a time. I have cried many, many nights from the misery the effect this disease has had on my body. And, not to speak for anyone else, but I would bet that I'm not alone in that some, if not all, of us are rendered incapable of doing even some of the most common daily activities/duties. I gave up all hope of ever returning to my former career. I used to fight it, too. I did NOT want to give in to the pain. I was also in denial.I desperately wanted to prove I could still "be me". I did learn, however, that many times, many days, on many occasions, I was hurting myself worse by fighting it. I did NOT want to accept the fact that my life WAS drastically different, and WAS going to be, for the rest of my life. Like it or not, I had to create a new life. The blessing, for me, came when I finally came to terms with my limitations. God led me to a dream I had back when I was a young girl, writing - and someday to be published. Now, I WAS fortunate in that I was married and had recently become a stay-at-home Mom. I had the luxury of not having to work. What I HAD to learn, though, was moderation. Near impossible for a type-A personality. All my life I'd juggled 8-10 responsibilites, between my children's acitivities and my involvement in Church. My husband pointed out that I was using all my energy and "good health time" on my regular activities, and then had nothing left to offer of myself for my home life. I found the biggest challenge to be balancing what I want, and what I can, do. It forced me to re-prioritize. Anyway, my point is - this entire ordeal has been extremely difficult. so, I'm here to help those I can, and to get ideas from y'all as well. We're all in this together. It's SO wonderful to have new friends, where we all understand each other. It's been a VERY lonely road, for me, these last 9 1/2 years. For the record, my latest "blow" was my husband leaving me for a woman he met in Seminary, and telling our counselor (on the one & only counseling he went to, AFTER agreeing to go to counseling alone & together) that my illness "irritated" him. Well, gee, it sort of irritates me too! Now, I am facing my illness alone. so, I feel VERY blessed to have found this group. I look forward to developing new friendships, with women (and men? or is this women only?) with people who KNOW & truly UNDERSTAND the struggles. And, I understand y'all's. May God bless each and every one of y'all, and have mercy on you by blessing you with healing. Your sister in Christ, Lisa

Marsha - posted on 01/27/2010

I am sitting up right now in pain, have been in pain all day , It is one of those nights where i just want to cry. I have just finished working 8 hrs and it has been all i can do to get thru it.I have red all of the other post and i want to thank you all , i did not realize so many others suffer like i do. My Dr. has me on pain meds and muscle relaxers to help with the knotting up and cramps , this is so i can sleep , as u read this u can see how well its working. I am going to have to go back and talk to him about alternative because this is just not enough. I have went to working part time and i am just not willing to give up my career . I feel like that would be letting this sorry pain whip me and i am not to that point yet , i am going to fight . I feel like i have let it get the best of me by going to part time. It seem that no one else that i work with or know has ever had this kind of problem and it is hard for me to talk to people about it. People just seem to think that u are a hypochondriac or a complainer and that this is not really a condition that exist, sometimes i'm not sure my Dr. is taking it seriously and he's the one who diagnosed me four years ago.I am at the point that i am just so frustrated, it seems like there is no relief in sight and i am so tired of the pain.I am glad to finally find somewhere to go for some support. Thank you guys

Lisa - posted on 01/25/2010

I think I forgot to mention that Skelaxin has been one of the MOST helpful of my meds. AND, I take Vitamin E - which has almost completely gotten rid of my brain fog. I very rarely have it anymore. OK, I have questions!!! I noticed several of you mentioned Provigil... what is it?, how does it help?... I, also, have the problem of having put on lots of weight, because of being sedentary. Unfortunately, even though I could've had an increased activity level, because of my chiropractic care, my marriage was declining, and I suffered depression because of it. Now, he left me, for someone else (met her in Seminary). Anyway, not the issue here. Oddly, with our separation, my health has improved. I think the stress level dropped so drastically, I feel better. However, I don't know how to shed the weight... When I first moved into my own apt, three months ago, I dropped 23-26 lbs in 6 weeks. I was not really eating, but I also had begun a walking ritual. I walk my dog 1-4 miles per day, depending on how I feel. The walking has been really great in helping to loosen me up a bit, and with decreasing my leg pain. However, I am stuck now. I can't seem to lose anymore. *I noticed some of y'all talked about a Vitamin D deficiency. Is this common for Firbro/CF sufferers? Are y'all having a good response to taking a supplement for it? I promise I am not this wordy, most of the time. I am just very excited to be joining a group where people understand you. I haven't had a friend to talk to, who understands this, in over three years (when I moved from VA to TX). It's lonely being a sufferer of Chronic Pain and no-one around who really understands. It's a hard life.

Lisa - posted on 01/25/2010

Hi everyone. My name is Lisa and I have been a Fibro/CF sufferer for over 9 years. I currently live in Austin, TX. **I read through a handful of replies and thought I might jump in, if that's ok. I'll just throw a few things out, hopefully it will help someone. I also have a few questions, after reading y'all's replies. *First: When I had a hard time being diagnosed, initially, I was put through every test invented (it felt like); FINALLY, I was referred to a Rheumatologist, who diagnosed me within seconds. HOWEVER, that was in VA. When I moved to TX it worked differently. I had to begin seeing Pain Mgmt Specialists. But, I thought I would throw the Rheumatologist idea out there, as it appears the medical field works differently in areas. (I want to add that one year after I developed the Fibro - following a car wreck I was in & was really banged up - I was diagnosed with Osteo & RA Arthritis. I am a believer that once that auto-immune door was opened, it left me susceptible to a host of med issues). *Second: I have tried many, MANY, various drugs to manage the unbearable pain. In 2008, I was at a level of being a walking zombie. I lay on the couch all day, watching TV. Absolutely no energy, no drive, no life. (Long story short) I went to a chiropractor. Not your regular chiropractor. A chiropractor whose focus is on health and wellness. I kid you not, after my FIRST treatment with them, I felt so drugged on my way home, I had to cut my meds down. So... I began my own detox. (I knew how to wean off meds, I'm not recommending anyone do this unless you know how). Within 3 months I had dropped two-thirds of my medication. -If you're like me, when you've tried anything new you get a surge of relief. Then, after the surge, your body settles back to the pain you felt before. I have had this happen, time and time again- This HAS also happened with my chiropractic care, but it's been the **least** back-peddling of anything I have tried. It actually got me off the couch, and back into my life. I have been able to throw a ball with my son, go to various (walking) events, participate in activities I never could have before the treatment. NOW, don't get me wrong -- ANY season (weather) change, cold weather, RAIN, etc... tears me up. But, overall picture - I am back in the game! *THIRD: My current medication regime, which is working very well FOR ME, is -- Duragesic Patch 25mcg & 12 mcg; Norco 10-325mg, up to 2 daily, as needed; Skelaxin 800mg - 1 per day; Effexor 150mg (for pain, but I realized later it really has helped "level" me); (For Arthritis) Lyrica 100mg - 1 per day (am) & 200mg - 1 per day (pm); (For Arthritis) Plaquenil 200mg - 1 per day; (For Arthritis) Prenisone 20mg - one per day, as needed; Phenergan 25mg (upset tummy occasionally, because of all the meds); Pilocarpine (for dry mouth, caused by the pain meds, which can cause SERIOUS dental issues- I learned the hard way); Clonazepam .5 - one per day, as needed (prescribed for sleep - I have a terrible time sleeping). **Since I've rambled on for so long, I'll ask my questions in a new reply.

Annalee - posted on 01/24/2010

Hey ladies long time no talk to. Been very busy at work and just trying to live my life. I had a question, How does one go about losing weight when they have fibro and cfs. i dont want to have a flare up. Ad what are GOOD carbs.

Lisa - posted on 01/19/2010

Christine, my dr gives me a timed release type of morphine. It's a very small dose, only 15 mg call MS-Contin. In addition to Fibro and CFS I suffer from terrible back pain that radiates down my legs. The back pain it why he finally gave me the pain meds. I also take Cymbalta and it helps. I also have trouble sleeping so I take the generic form of Klonopin for that. I also suffer with terrible migraines from time to time so I have meds for that. Seems like when it rains it pours.

Rosie - posted on 01/18/2010

I am here my name is Rosie feel free to contact me.

Sherry - posted on 11/16/2009

Hi Audrey,
I was working on losing weight after my son was born in 2003 and then an auto accident happened when he was about 9 months old, chronic pain started and the long road to being diagnosed with fibro, chronic fatigue, IBS and a bunch of other related health issues. Some of the meds I have tried for pain, depression and all the wacky symptoms of fibro and CF just made me gain more weight until I was about 50 lbs over weight. I could not seem to lose any weight no matter what I did. Exercise is very difficult most days as I get severe increase in pain and post exercise fatigue.
One of the things my Dr refered me for was allergy tests and I found out that I have many food and enviromental allergies. Food allergies are apparently common with fibro and chronic fatigue, that whole wacked out auto-immune, hormonal, histamine response. Since seeing the allergist and adjusting my diet I have been losing weight (30 lbs) in the last 3-4 months, effortlessly! My endocrinoligist also just informed me that I am severe vitamin D deficient (I haven't noticed a decrease in pain with supplements yet-I take 3000iu a day of vit D. How much do you take?) and my doc is checking me for many other things as well.
The weight loss is a bonus but what I am noticing is a great improvement in my stomach pain, bloating and IBS issues in general.
It might be worth checking out for you! It did not matter how healthy I ate, the amount of calories or portion sizes I could not seem to lose any weight- until I cut out the allergens. Some food allergy symptoms can be increase inflammation, pain, excess mucous production, bloating, constipation/diareah (IBS symptoms) and a big one is brain fog.
Good luck!

Christine - posted on 11/15/2009

i actually lost 20 lbs 2 years ago----without trying. i think it was a combination of stress and going on a stimulant for ADD. (diagnosed at 40) i have put about 1/2 of the weight back on---i was too thin that i didn't look healthy, and mentally i was a wreck.

Christine - posted on 11/15/2009

audrey, i have an endocrine problem also, i don't have metabolic syndrome, i have an adrenal defficiency. i have so many hormones out of whack. the endocrinologist looked at my blood results and told me she had never seen this before.

hopefully when you get your thyroid problem figured out it will help with weight loss.

i had a nutritionist tell me about the vitamin D causing body aches---but when i was tested i wasn't low. now, i need to work on the eating better thing, i have much room for improvement and i can't help but believe it would help some.

Shannon - posted on 11/12/2009

This is quite a long thread, but a thread worth reading. I'm Shay, waves, and I'm here! It is nice to see such a nice conversation that is the reality of what we deal with everyday. Not alot of people in my world understand. I am going to ask my dr to add cymbalta to my list. I'll be back to this board more often. But until I get another chair, I'll be in and out. THIS IS A CRY TO SANTA: "Please replace my laptop dude!"

Audrey - posted on 11/09/2009

Hi, All. I was diagnosed with fibromyalgia a few months before my hubby and I got married in 2006. I have gained quite a bit of wait due to getting pregnant with my son. He is now 20 months old and I just cant seem to lose the weight which is causing me a great deal of pain. I have recently gone to my doctor for blood tests due to some other health issues and was diagnosed with Vitamin D deficiency. I have noticed a substantial decree in pain since going on a vitamin D supplement. I have been able to go from taking 2 tylenol PM's to taking only one and there have been a few nights where I have been able to sleep completely med free in the past few months. I would highly suggest getting vitamin levels checked. Also in the past when I have made good changes in the things I eat, like more fresh produce and less fat and bad carbs I have also seen some changes in the amount of pain. I would suggest seeing a nutritionist that deals with people with fibro. I had a total blood workup about 6 months ago and was able to put a name on what is wrong. I am currently going through the process of getting a good team of doctors on my side to help treat all of the issues that have been diagnosed currently. I was diagnosed with metabolic syndrome/PCOS, borderline diabetes, vitamin D deficiency and still in the process of finding out what is wrong with my thyroid function. I would like to know what you all have found helpful in losing weight with fibro. I know it can be very difficult when it causes so much pain when I exercise. I really need to lose at least 50 pounds.

Christine - posted on 11/06/2009

jeanette, what antibiotics are you referring to?

Sherry - posted on 11/05/2009

Jeanette, I do feel for you. My youngest son was 9 months old when I was in an auto accident that started my chronic pain, then fibro and all the fun that goes with it. He has never known me any other way but in pain and taking all kinds of meds and at the Dr's constantly. He is 6 now. My older son who is now 12 told me not too long ago that he remembers when I felt better and I could do more things. I think it is harder for him than my younger child because he does remember my former self.
You have to remember that feeling guilty is a choice and that you and your husband are doing the best you can with what you have. Your son will grow up knowing that he has two parents that love him and do the best they can for him. Take care

Jeanette - posted on 10/24/2009

Annalee, I just joined your circle! I was diagnosed with Fibro in April of 2001, and that just seemed to be the tip of the iceberg. After that came spondylitis (undifferentiated as of right now), facet joint syndrome, radiculopathy (I've had the nerves in my lower back "burnt out", but the pain came back), and periodic limb movement disorder. And that's on top of all the "fun" symptoms that come along with Fibro.



My husband is currently going through the diagnoses process himself. He just started, so right now the doctor is doing the "ruling everything else out" thing, but if you look at the list of his symptoms, they pretty much just scream Fibro. Ironically, the trigger for both of us was two different antibiotics in the same class that have been shown to cause Fibro in some, along with a host of other problems (most of my problems can be traced back to it). I kinda feel for our son, who is going to grow up with not just one, but TWO parents with chronic pain.

Annalee - posted on 10/22/2009

Raelein, your very lucky i tried the lyrica and it made my vision very blurry. so i had to quit taking it.

Annalee - posted on 10/22/2009

Carolyn, I take the cynbalta and the ritalin and i have no problems at all. I dont see any reason why they would interact with eachother. thats weird that your dr said that. I have been on percocet for about 2 years. im afraid to try the oxycotin. how are you feeling on it? I live in Utah and yes I have 5 girls. Do you have a facebook? Find me and we can be friends and you can see the girls and my grandbabies too. thanks for the talk about being tough and you are there for me. your right this sight is wonderful i love talking to all the ladies and making new friends. well Im gonna go rest write when you can. Annalee

Raelein - posted on 10/22/2009

I also take Geodon, and I take 2 Benadryl at bedtime to help me sleep - otherwise I'm up most of the time.

Raelein - posted on 10/22/2009

I have been on Lyrica for quite awhile now. I also take Tylenol #3 and Soma. The Soma is actually for my migraines, and my back spasms which are caused by a herniated disc. Anyway, about the Lyrica. It helps me *a lot*! Once, I decided not to take it for a day, just to see if it was doing much. The pain without the Lyrica was almost unbearable. I started taking it again right away. I take 1 capsule 3 times a day. I don't take nearly the amount of Tylenol 3 I used to take, or Soma, though they both help in the doses I take them in. The Lyrica works!!! At least it works for me. Good luck!

Carolyn - posted on 10/22/2009

Annalee, I know what you mean. Every time I have to ask for help with something I used to do on my own. It took me a long time to admit to myself that I wasn't broken or lazy. I would tough trough it and do it on my own and seriousy pay for it the next day. Every time it would take me longer & longer to recover. Then I would think about how sad and broken I was because I couldn't do things on my own anymore. We may not be physically strong anymore but I know that we are mentally stronger. Every time one of us is going through a tough time all the rest of us are right there (mentally) cheering on! We are differant then we used to be but in some ways we are better. And besides, if we didn't have to go through these struggles we wouldn't have each other. I feel blessed to have all you ladies in my life. Never forget that. Things were a lot tougher before this site.

Annalee - posted on 10/22/2009

christine, I used to take provigil and ow they have nuvigil. It seems to work the same for me.

Christine - posted on 10/22/2009

annalee, did you mean provigil? i took it once and it did not do a whole lot for me. i take vyvanse 70mgs in the morning---(sometimes really early along with pain meds and go back to sleep) then i take 30mgs adderal in the afternoon. i was diagnosed at 40+ years with adult ADD, but one of the psychiatrists told me that they also treat people that are taking narcotics with stimulants to help counteract the fatigue. but, sometimes i am still exhausted or really sleepy anyway. i can be crocheting and dose off half-way through a stitch, then jerk awake and have to start the stitch over----only to do the same thing again.LOL!!!

Carolyn - posted on 10/21/2009

Annalee, I live in michigan. I have severe arthritis in my back injury and the weather in MI changes very drastically very quickly. So far as the flare up, I have never been diagnosed with fibro but I have several symtoms of fibro and chronic fatigue. I was told that fibor and fatigue can be brought on by a major physical trauma. I have had 10 surgeries due to the endomitriosis, a hysterectomy, a blood clot in my lung, two bulging disks, degeneritive disks, and severe arthritis in those disks. The hardest issue to deal with is the arthritis pain and the fatigue. The last arthritis flare up was about two weeks ago when the weather went from 65 degrees and sunny to 45 and rainy in a matter of a day. I asked my doctor about ritalin for the fatigue and he said that it can be done but it is a tricky balancing act to transition from the cymbalta to the ritalin and they can not be taken together. I really like the way the cymbalta works so I haven't switched yet. I have to think about it some more. Even when the arthritis is not in a bad flare up my back hurts so bad I don't get a moments rest from the pain. After years on percocet and tramadol, I just recently switched to oxycontin and it seams to work very good. I had been on the percocet for several years and it just recently wasn't doing anything for the pain. Where are you from? I read that you have 5 girls. That is amazing! We have 1 girl (7). She just makes everything worth while. When the fatigue is really bad my body feals so heavy that it just hurts all over. It almost feels like the heavyness is painful.

Annalee - posted on 10/21/2009

Hey everyone, the last while at night when I lay in bed I start to think of all the things that I used to do. taught aerobics, swim, taekwondo etc...and i start to beat up on myself. Im not as thin as I used to be, my house is not spotless like it used too be etc... and i basically beat myself up. Anyone of you guys ever go through that?

Annalee - posted on 10/21/2009

Christine thanks for the crochet info

Annalee - posted on 10/21/2009

Carolyn, when im that tired all I know is my entire body hurts dont know if its the fatigue or the fibro. But when im fatigued it seems like i have more pain so maybe it's the fatigue that is causing the pain to be worse. Where do you live again? When was your last flare-up?

Annalee - posted on 10/21/2009

Sherry, This is what I take... in the am nuvigil and ritalin( extended release) in the afternoon i take another ritalin. At bedtime I take my cymbalta, abilify, and trazadone. I also take b-12 when i remember and I get b-12 shots at the doctor too. plus I have other meds that are not related to fibro or chronic fatigue too. I like the trazadone because I wake up and dont feel drugged. I also have my percocet for the pain. Hang in the if you have more questions you can call me 801-390-1597. I just want you to find some meds that actually make you feel some what normal. This last year has been very good for me.

Christine - posted on 10/20/2009

annalee, you can google "free online crochet patterns" and come up with tons of patterns for all kinds of different crochet items.

Carolyn - posted on 10/19/2009

With pain already pretty heavy on all of our plates, why does fatigue have to be so painful? Does anyone else feel that fatigue is painful?

Sherry - posted on 10/19/2009

Christine, the lead in the veins is a very good analogy! I find it difficult to descibe sometimes what I feel like and that is very accurate. Your arms and legs are extremely heavy and with me it starts heavy and by the time I get 3/4 up my stairs ( I live in a two story house) I am using all fours to try to make it up. Thank goodness that is not all the time. Sometimes I really wish I lived in a bungalow!

Annalee, I am interested in what combo of meds you're on. You know, always looking for that miracle! I was just perscribed Zopiclone to help me sleep but I get so nervous starting new drugs due to some really nasty side effects I have had. I think I will wait for the weekend in case I feel rotten in the morning, can't risk adding to symptoms when I need to get my children to school.

Carolyn - posted on 10/19/2009

Annalee, I love the new profile picture.

Tara - posted on 10/19/2009

I was in the air force for 8 yrs. I was medically discharged for chronic pain syndrome. I was in 1998-2006.

Annalee - posted on 10/19/2009

Christine, yes that is a great way to put it. Even breathing is a chore at times. I remember times just sitting on the side of the bed and crying because I was sooo exhausted. Hai, make up , bathing etc... goes down the drain. This will be my first winter since all the med changes so it;s gonna be interesting to see if I have a flare up or not. so sorry you have arthritis on top of the fibr and fatigue. Hey do you know a simple chrochet plan i want to make my daughter a baby blanket.