Too tired to do it, but know I should

Discussion in 'Fibromyalgia Main Forum' started by true, Feb 6, 2003.

  1. true

    true New Member

    Hello, I am new here. I guess I came looking for support and advice. I haven't been diagnosed with CFS or FM. I have been diagnosed with Endometriosis, and have had some treatment for it. I currently have a 3 yr old and a 1 yr old (who I am still breastfeeding). My mother was diagnosed with CFS and FM, and my gran has been diagnosed with Polymyalgia.

    I thought a lot of my symptoms came from the Endometriosis, but my Mother is convincing me they are not.
    Both pregnancies I was on severe bedrest for many reasons, and I am suppose to see a GI soon for IBS.

    My current general practitioner looks at me like I am insane...saying that it is normal to have my legs and arms go numb at night... after having an epidural (but, 12 mos later?)...he says that I am "probably not sitting up straight", causing the burning between my shoulder blades and shoulders... he thinks the migraines, severe head and neck ache are from tension and hormones...that my ankles, knees, wrists and elbows reiking with sharp pain at night are from lack of calcium...that my tailbone and hips hurting(so bad in the morning i need a heatingpad), is from "a bad mattress" or my "sleeping wrong" (my mattress is an expensive ortheopedic mattress). He thinks my chestpain is from anxiety, as well as my lack of sleep and constant sore throat with lymphs that swell enough you can see them standing out on my neck. He thought my constant exhaustion was from full-time parenting and possible anemia. He did a series of bloodtests which showed nothing.
    He offered me more phenergan (which I denied) and told me to come back if I still don't feel well. I don't trust him to go back there. Through-out three years, he hasn't been much help and he makes me feel quite guilty for going in without a fever.

    My OBGYN is the one to suggest seeing a GI and a specialist. He does not agree with my GP.
    He watched me through-out my pregnancy and so on, and believes there are more possibilities (like FM/CFS).
    Is this common for GPs to not be aware of my symptoms?
    I went through the similar scenario as a teen with Endometriosis. It took years to find a practitioner that believed me when I said I was in so much "female-pain".

    I am afraid to be diagnosed for several reasons:
    1. it would then be a pre-existing condition, and my healthcare is insanely high enough in cost.
    2. I don't want to be a pill-popper and miss my children's lives (I am an avid attachment parent, tho it's hard for me to even get out to the park lately.)
    3. I am afraid my husband will be greatly disturbed by this, since his Mother was diagnosed as a hypochondriac (I don't know what the name of her mental illness.) I am afraid he will become disgusted with me, though I feel at times he is already disappointed when I don't have the household chores all completed.
    4. I am afraid other family members will think I am "jumping on the band-wagon" (since my mother and gran suffer with the two auto-immune diseases.)I have already been ridiculed until I provided proof of my having Endometriosis. My mother and gran do support me, tho.
    5. And now I feel this will all be diagnosed as "depression", because I am now very emotional/sad about it.


    I guess that's it. How many of you relate to any of which I shared? How many have been in my place, but got past it?
    How many of you are managing well, while raising beautiful children?

    I don't want to be a victim. I want my life back, and to be a healthy active mother. I am going to be twenty-seven.

    Thank you,
    True~

  2. true

    true New Member

    thank you for your response and the time you took to read my long-winded post. I wish you well-ness.
    oxox true~
  3. northwoodssue

    northwoodssue New Member

    Hi True:

    Had to respond to your many problems, concerns. First, this is a great place to air ALL your feelings, complaints, questions. Believe, the people on this board have heard it all before, or lived through it!
    First of all, endometriosis seems to be one of the problems associated with fibromyalgia. I had endomettriosis at an early age and a complete hysterectomy at the age of 25. So, I know where you are coming from! I didn't have fms at that time, but was diagnosed with it 6 years ago.
    The pain you describe sounds like it could be fms, but you must get dx'd by an MD. Please read everything you can about this disease; this site is very informative.
    Please don't be afraid of having fms diagnosed. The medical community is more aware of it now, and insurance companies have had to deal with it before. If you are just diagnosed having fms, it would not be a preexisting condition if it was never diagnosed? Right? I mean, how can they say that if it was never dx'd???
    2) As far as being a "pill popper"., you might not need anything at all. But most of us take pain meds, vitamins, herbal remedies, sleep meds to help with our symptoms. Don't be afraid of these - They are to HELP YOU and your symptoms.
    I feel I must answer 3&4 together. Who cares what they feel or think??? You know how you feel. I can't believe you had to have your endome verified for the family!!!! FMS and endometriosis are medical conditions and should be taken seriously.
    I got my husband a wonderful book to help him understand my fms, it was called "The fibromyalgia Supporter" by Dr. Mark Pelligrino. It helped him immensely to understand what I was going through. He ha s fms himself. Maybe this would help your husband and family?
    I see alot of guilt on your part in this post, and would like to reassure that it is unfounded. You are not responsible for your illness. Please don't not get dx'd and help due to these fears. The help might be all you need to feel better.
    I hope you will continue to post on this site, as we are a family here and are here to support you.
    best of luck - hugs.....
    sue
  4. bluebirder

    bluebirder New Member

    I fully understand your reluctant thoughts on being diagnosed. People just roll their eyes.
    I had a hard time explaining to my daughter on the phone the other day just what FM is.

    Her view of pain is simply "no pain, no gain"
    Can't get her to understand either. She is getting married in June and I am really not part of the planning for it. At this point though I am glad she and her future mother in law are taking over that.

    We got together the other week. My mother in law (old), hubby sister (mentally disabled), me, my daughter & fiance'. We got there two hours early so by the time it was time to go in the Rain Forest Cafe' I was already wiped and sore. Afterwards hubby and daughter took off in that big sports store there telling, me & his mom & his sister to wait right there on a bench. I was silent but livid by the time they came back. I had to keep standing up, walking around and sitting back down again. My back and butt hurt and my feet were killing me! I was soooooo tired. My mentally ill sister in law ranted and raved. No one noticed how bad I felt because she was making the big scene! I could hardly keep her calmed.

    And we are supposed to pick them up again in the morning and take them up to see my daughter & fiance' for brunch. Want to see my daughter but I pray it isn't a repeat.

    I've already had enough. Tonight hubby and I are going to see a comedy act his old work buddy is part of. My head is in such a fog today....at least I won't have to cook diner.
  5. true

    true New Member

    Thank you everyone who has commented with their support.
    It helps my mental state atleast.

    Seaview,
    How do you do it with 5 children?! I commend you.
    Thank you for your suggestions and sympathy/support.

    Northwoodssue,
    Thank you so much for sharing and your book suggestions.
    Thank you for your sympathy/support.

    Bluebirdrider,
    Thank you for sharing your experiences. I hope that brunch goes much better for you. I can completely empathise with your ordeal at the mall. :/ Perhaps you should look into Northwoodssue's suggestions for books. Sounds like you need something to give to your family. Thank you for your support.

    Thank you all. I know what I have to do.
    I am hoping to star a pilates class and get some excercise at the YWCA this Summer. My mum is currently enrolled, and says that it is helping her tremendously.

    oxoxox
    true~
    [This Message was Edited on 02/07/2003]
  6. EllenComstock

    EllenComstock New Member

    Hi, True:

    Welcome to this message board. I think you will find a lot of love and support here as I have. I also have endometriosis (diagnosed three years ago) and fibromyalgia (diagnosed last summer) although I believe I have had both diagnoses most of my life. I am so exhausted most of the time that I probably also have chronic fatigue syndrome. I think it's important for you to get a diagnosis, although as you may know, there is no definite test that shows if you have fibromyalgia. For me, although the diagnosis was devastating, at least I no longer had to worry about whether or not I was losing my mind. I have a hard time with the fibro-fog and my cognitive abilities have been diminishing.

    My best advice to you to find a doctor who specializes in fibro. Keep in mind that finding a good doctor may take some time, but you need to find someone who understands fibro and will work with you to decrease your pain.

    Before I knew I had the fibro, my endo specialist insisted I needed to have a hysterectomy. He said that would completely get rid of my pain. I'm glad I did my own research and discovered I might have fibro. When I asked him about it, he said he didn't know anything about it. I don't expect him to be an expert on every disease, but certainly he should have known that women with endo have a greater risk of developing other conditions such as fibro, allergies, lupus, etc. Had I listened to him I would have had the hysterectomy and still been in pain! I'm not trying to scare you, but read and educate yourself all you can. My opinion of the medical profession has changed in the past few years. I still believe there are good doctors out there, but you have to do your homework. If a doctor isn't helping you, fire him and find someone else. There is a list of doctors on this website to help you.

    I know it's hard, but I have had to realize that what people think of me isn't always important. You have to do what's best for you. You have to help yourself so you can be the best mother you can be for your children. As your children get older, they will be able to better understand that you can't always do everything that their friends' mothers can. My husband and I wanted to have children, but by the time I was finally diagnosed with endo, it was too late and I was infertile. I was misdiagnosed for many years-went to a urologist and had several surgeries for my supposedly small bladder that was causing my trouble.

    Sorry this is so long, but I hope that I and the others have been of some help for you. Write back and let us know how you are doing. I know if this board didn't exist, I would have a harder time getting through some days.

    Ellen
  7. true

    true New Member

    Ellen,
    Thank you so much for your response. It sounds like you have been through a lot. I am disappointed, because I want to give so much more of myself to my children. They are still so young at the moment, but I wanted to be that Mother that gave the parties and helped the school. I know I still can; It's just right now, I wonder where the energy will come from.

    I use to be the girl with the elephants memory. I thought my mind slipping was due from the saying "you have got a case of the old mommy brain". I thought my brain cells were going to plump back up after my hormones came to their old level. I have learned that it isn't so. I am writing things down to remember. I can remember my mortgage ...and that my children need to be fed etc.,.
    But, i can't other things to mail...and stupid things like why I am standing with the fridge door open.

    My OBGYN said he wasn't sure my pains would be gone after a hysterectomy, thus why he insists I see a specialist.

    Your response has helped a lot. And, I thank you for that.

    oxox
    true~
  8. tandy

    tandy New Member

    And welcome to the land of the lost!!!LOL just kidding!
    I'm a mom of 3 boys,ages 6,10 and 21.I have had FM and endometriosis for almost 11 years!!!eeek.... I still have my female organs as I insisted on keeping them~ Not to have more children,I just did'nt feel confident that all my pain would be gone!! I have IBS too and some food sensetivitys that go along with the IBS.I avoid lactose,that helps me somewhat~ I"ve had a 5 abdominal surgerys,three for the Endo.(so far)I expect another because I still have alot of pelvic/back pain and tailbone or butt pain.I get the depo injections to keep the endo at bay.(but I hate them and they're side effects!!) Anyway,you really sound like you have more than the endo!!I'd say your on to figuring it out yourself!Good job!!!Your symptoms do go hand in hand with Fibro.But with the swollen glands ,and sore throat thats a major symptom of CF.
    You really should get a referral to a Rheumatologist.Write all your bothersome symptoms down on paper before you go.
    I understand totally you wanting to be in your childrens life,being a room Mom in school.Going to soccor meets or baseball games!!! You can do all those things....but you have to pace yourself.I just offered my time for my 1st graders Valentine party!!! So I will literally need to take it real easy the day or two before!!(I'm not kidding)
    I do try to nap for an hr everyday.Otherwise I just cannot function till 8pm!!I cannot! Seems too that the more tired or fatigued I am...The worse the brain drain!! Sometimes I can't even think straight~ I forget things etc...
    Do you have alot of muscle aches?are you tired all the time even after sleeping well? How do you maintain your Endo? My two diseases seem to be in tune with each other.....when one acts up real bad,the other one does too!!So It can be hell at times!!! I added magnesium and malic acid recently to see if that helps me with the aches and give me more energy~(alot of members here swear by it!!) Its sold here at the store site.But I believe you can get it at any health store. Well I guess I talked your ear off!Hope I've helped in some way~ I'd be happy to hear more from you. I hope you get some answers soon~Stay in touch~
    Warm regards,
    Tracey
  9. Mikie

    Mikie Moderator

    You've come to the right place. First, congratulations on your two children. Many with your condition are unable to have children. Endomitriosis is common in women with CFS/FSM.

    Second, either you have it or you don't. You need to get a diagnosis to ensure that you do not have something like MS which can mimic our illnesses.

    Your GP is not going to be of help to you. Listen to your OB/GYN. It shoud not be a pre-existing condition if a doc didn't diagnose it. The fact that your GP says you don't have it will work in your favor here. If you have a group plan through an employer, it doesn't matter anyway. It'll cover pre-existing conditions.

    Finally, Sweetie, you will make yourself crazy if you worry about what others think. The more you worry about it, the more power over you that you give to them to make your life miserable. You know something isn't right and that's all that counts.

    You need to become very proactive and find a good doc to run all the test and make a diagnosis. Your children need you to be your best. There is a lot you can do to improve you quality of life with these illnesses, but first you need to get diagnosed. Learn all you can about the illnesses and treatment options. We cannot depend on our docs for this. Becoming proactive will empower you.

    Love, Mikie
  10. true

    true New Member

    Hi Tracey,
    Thank you for your input. I had no idea that endometriosis really did seem to go hand in hand. It seems so many women with FM have Endo, too. My mother is currently recuperating from a two day stay here with my daughters and I. She was really good the two days she was here, but my three year old woke her at the crack of dawn...and then by the time she got home, she couldn't sleep...and so today, she is worn-out. And you know what? She'll do it all over again cos she is sooo in love with her grandbabies!
    I wish you luck and hope you get plenty of rest before the Valentine's party.Please update us on the Valentine's party.
    Again, thank you for your responses.
    oxox
    true~

    ps. thank you everyone for your responses.

  11. true

    true New Member

    Yes, you are right. Thank you for your response.

    My worry about health insurance is more of, if I get diagnosed now and my husband takes a new job, this leading us to a new health insurance policy...what will happen? what will they cover? That is what I am worried about.
    I have been given grief over the endo.

    Yes, I know I need to get off my duff and do something.
    My mother and I were just talking about this. I can't let the pain own me, especially if I want to be that type of mother I wish to be. I don't want to doddle now...causing myself to get worse and miss out when my children are having their children.

    Thank you for the welcome!

    oxoxox,
    true~