Discussion in 'Fibromyalgia Main Forum' started by cjr2003, Mar 12, 2006.

  1. cjr2003

    cjr2003 New Member

    Hi everyone :>) As some of you know, my husband and I have been on a planned, special journey for the past 8 months. 8 months ago almost to the day, I went off the meds that some of which I had been on for 10 years since my diagnosis for fibro in 1996. It has been a very hard journey; filled with withdrawal symptoms for months, and so far we have only been able to try for a baby for 3 out of the 8 months due to detox taking longer than originally estimated/withdrawal syndrome and the past 2 months we have dealt w/ ovarian cysts. I very much want to get back to trying for a baby in 2 weeks; around the time I will ovualte next, but I am finding myself questioning my abilities to cope. I was put on Lyrica as a temporary med after I had a cyst to burst and had horrific ongoing pain that followed. I will have to wean myself off this med w/ in the next two weeks in order for us to safely try for a baby. I was only taking 75 mg per day, so I am not worried about withdrawal; although I am not excluding it from a possibility. My main concern is the unremittent nerve pain that I have every day non-stop, and that the Lyrica greatly helps. For part of the day while I have the Lyrica in me, I feel so much relief, but as soon as the Lyrica wears off, I am in utter despair. This nerve pain started back in December, and has only gotten worse every month. I was on Neurontin before and stopped taking it last August. I believe the Neurontin controlled this horrific pain/symptoms while I took this med. It is the worst/most annoying pain/set of symptoms I have ever endured. I wake up at night scratching my head and every other place that I can uncontrollably almost. My skin burns/itches/tingles and I cannot stand anyone or anything to touch me. ( imagine trying to actually enjoy intimacy when u feel like this ) It is a misery I never knew was possible. To me, it is the closest thing to sheer torture that I have ever felt. What I sit and question, is, when/if I get pregnant - is this symptom/pain going to get ANY better? I need anyone out there who has been pregnant w/ fibro and has experienced nerve pain prior to pregnancy to please respond to this post. I am trying to come to terms with the horrific battle I am up against/ trying to determine if I am making the right choice here. There is no doubt in my mind that I want a baby w/ my husband more than just about anything. But, as each day goes by and my symptom list piles up higher - my husband and I both worry about my body, and if it can handle this, or if we are just crazy for even trying this!! If I already had one/two children, there is just no way I would put myself through this. I cannot imagine being pregnant right now and dealing w/ all of these symptoms that I am dealing with. I have to go back for my LOA from work by July, and that means I will have to go back on more meds in order for me to be physically be able to work. Down the line, our next plan would be to go down to the least amount of med's possible to still work and try for baby at same time if even possible. I feel so very discouraged right now; beaten down by this DD. Love to all, Carla
  2. kch64

    kch64 New Member

    I know the torturous (sp) pain you are speaking of. It's horrible.

    But is can get better. When I was feeling that kind of pain, I was about the same age you are (33).

    It took several years for me to get over most of the pain.

    I think you may need to wait a little while and see. You are still young enough to try for a baby later.

    How are you going to care for child, if you can't stand to be touched very much?

    I hope and pray that you start feeling better soon.

  3. NyroFan

    NyroFan New Member

    It is just my two cents, but I would go over all of the above info with the doctor treating you for FM and/or CFS.
  4. cjr2003

    cjr2003 New Member

    Hi :>) The "not wanting to be touched" feeling is because I have been deprived of my normal meds for the fibro for 8 months now. My nervous system is haywire completely, and every nerve in my body feels like it is exposed. When I am on proper medication, I do not feel this way. I am planning, after I have a baby that I will resume my meds, and be very functional in caring for a baby/child. Breast feeding will probably not be an option for me because of my pain levels. That is unfortunate, because I have always wanted to breast feed, but that was before fibro took over my life basically. What do you mean by you "got over the pain" after several years? I haven't looked at your profile, what kind of treatments did you do to get yourself where you are now? I am trying not to panic about being 33; 34 in August and still no baby. But , the clock is ticking and I don't want to wake up tomorrow and be 40, and still no baby. LOL Carla
  5. cjr2003

    cjr2003 New Member

    Just had an appt. w/ my pain management specialist a few weeks ago. All my dr's are aware of my present circumstances and all of the above info :>) My pain management sp. is the one who treats me for the fibro primarily, and he is the one who put me on the Lyrica temporarily. LOL Carla
  6. kch64

    kch64 New Member

    I still have pain, but it's not as severe as when I first started having all the symptoms.

    it's been a long hard struggle, and at times it can still rear it's ugly head.

    but, at first, I had terrible burning pain all over my arms and legs, like I had been burned underneath the skin. I had crawling pain and pins & needles feelings.

    had the feeling of something crawling on my face. It was terrible.

    No one could diagnose it. Went through the neuro stuff for possible MS and all tests negative.

    about two years later, my gynecologist diagnosed me with hypothyroidism and started me on thyroid hormone. It still took a long time, but slowly the pain starting becoming less severe at times.

    I still have some burning pain in my upper back and arms. At times it flares and is very bad.

    Taking thyroid and and supplements plus spending a lot of money on natural therapies, has helped me become somewhat better. My pain used to be a 10 on a scale of one to 10.

    Now it's usually at the most, a 4.

    However, I never know from day to day how I'm going to feel with my energy levels.

    Anyway, whatever you decided, your heart-of-hearts knows what you need the most, and if that is a child, I wish you all the best.

    Some women feel great when they are pregnant. If you're going to start your meds again after, then maybe you should keep trying.

  7. cjr2003

    cjr2003 New Member

    I was just getting around to looking into the worship board. Had seen the new post about it and am definetly going to visit there soon. I believe in the power of prayer, and I know that is the place to put a prayer request in now. Thankyou for reminding me! I now have another post it stuck to my computer desk! Oh, there are just too many post it's in this house! Between me and the hubby, it's like a new kind of decor in the house! :>) LOL Carla
  8. cjr2003

    cjr2003 New Member

    Appreciate your post's so much right now. Thanx for the details of what you have done to be healthier w/ this disease. I have hypothyroidism. This makes me wonder if I need to get my bloodwork done? But, now that I think about it, last month when I was in the ER, they did some bloodwork. They did, a creatine test, a BUN, a BHCG Quantitative, and a CBC with DIFF. I wonder if the thyroid test is included in those? I don't know, will have to find out. Yes, I have those creepy crawly feelings and it is enough to drive one over the edge at times it gets so blessed bad. Going from a 10 in pain to a 4 sounds like such an improvement! Good for you! So glad to hear that someone has had significant improvement in their life and battle with this disease. Any particular supplements that you would suggest that you feel played a big role in helping w/ your symptoms? Thanks for the support Kendra. Appreciate you! LOL Carla
  9. Pianowoman

    Pianowoman New Member

    There are Doctors that specialize in researching drugs that are safe during pregnancy. I'm in Toronto and the group here is called Motherisk. They have a website; however, I'm sure there are other such organizations.
    My point being, that if you had the right advice, there might be a med you could take that would be safe and would provide you with pain relief as well.
    Just a thought. I really hope you find a way to manage this.

  10. Lindy2

    Lindy2 New Member

    I am wishing you many Blessings and hope that everything works out for you and your husband.

    Gentle Hugs,
  11. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    It is used often to treat neuralgia and is pretty safe to use for pregnancy.

    I haven't had kids yet, but it's just an observation that most woman get a pretty good remission from pain during their pregnancies because of the high hormone levels.

    Good luck w/ it all.

  12. ilovepink4

    ilovepink4 Member

    i have four children....i got sick after we had them....two were "homegrown" ..two were adopted....

    i have two comments...the first is that the guilt i suffer for not being the mother i want to be is miserable....

    secondly adopting our boys was the most exciting thing i have ever birth is a miracle....having someone give birth to a child and then to be given that child is wonderous!
  13. bettydroop

    bettydroop New Member

    gonna post the same thing that piano woman posted.

    MAYBE... you can still take a smaller dose of something there might be something you can do. Like she said go to an EXPERT. Really research for awhile. If you were going to wait a while anyway then give it a real go and find someone that can help you.

    Do have other symptoms besides the nerve pain? If thats what the only concern is... happily I think maybe something could be done and you can do both! Wouldnt that be fantastic. I hope it works out for you!

  14. Cromwell

    Cromwell New Member

    Anne here,

    One of the things you may want to try, and I talked about this before, is to maybe train for the foster care program, but just do respite and only with babies, for weekends, usually Saturday overnights.

    It will be great for the permanent foster parents and will also give you a real opp. to se how you would cope.

    If I had not done all that foster care there was no way I would have had my third child at 47 with a 28 year gap between kids!!!! BTW my FM went away when pregnant.

    I know how you are so sweet natured and how you would make a great mom, but it can be tiring when one is ill. Am I reading that you want to go back on your meds? You have had all the stress with Tabby lately, this musy have affected you too.

    Another idea would be to volunteer at your church nursery, or maybe you do that now???? Or even babysit for some of the young folk in your church? A couple of hours, see how it goes? Then add a bit longer.....see how you could manage caring for a baby with the pain there.

    Have you tried the guai???

    Nothing like trial and error.

    Much Love to you.

    Anne C
    [This Message was Edited on 03/13/2006]
  15. MamaR

    MamaR New Member

    I sure hope that you are doing better today. I think of you so often!

    I have been missing you all....but not up to being here much. I have IBS, and other stuff going on.

    Just please know that I am thinking of you, and remembering you in my prayers sweetie.

  16. cjr2003

    cjr2003 New Member

    acesnanna : it's awesome to hear that your fibro went into remission while you were pregnant. I have heard stories of it going both ways. It seems the longer we are at this process, the more things I think of to be scared of. Probably because I need the meds so badly to control the many things that are wrong w/ me because of the fibro. The IBS, the nerve pain, the migraines, the sleep disorder etc. I have been praying alot about this. I feel the Lord will bless us when he sees fit, but it is hard to leave "this" in the Lords hands and just relax. Thankyou for the support :>) It is good to hear that those w/ fibro have had multiple children ( and lived through it! :>) )
    Love, Carla

    Kathy - T-u for the tip on the dr's who specialize in researching the meds :>) I am going to google that and see what I get! :>) LOL Carla

    Lindy - thankyou hun for your support :>) Hugs to you! Carla

    Jeanne - I did not know this about St. John's Wort - I had been on this before I went on an antidepressant years ago. Am going to look into this :>) THANKYOU, CARLA

    ilovepink4 - I just love the "homegrown" phrase you used :>) hee hee - I def. want to have "homegrown" ones preferably, but if it came down to it, I would def. consider adoption/foster care if I could not have little ones. I think I know the guilt you spoke of . . at least somewhat already. I feel that way many days of the week if not all right now for not being able to be the wife/leader in our community that I so want to be. Not that I am a bad wife, but I feel so limited continually. And I do worry about that spilling over into motherhood, although I also feel that w/ all of the love in my heart that I have saved up for children that it could still be enough for them :>) I surely hope :>) thanks for your comments, much love, Carla

    Karen - Yes, our "back-up" plan for if we don't get pregnant while I am off the major meds is to ( down the line) take a lesser dose while going back to work, and between ovulation time and menstrual cycle time, go down even more, and be cautious as to any sign of an early pregnancy, as to go off certain med's. But, yes, how do I find an "expert" is what I am wondering - haven't researched this yet, but am wondering how to go about this? Yes, have many other symptoms w/ the nerve pain unfortunately. Have IBS, migraines, sleeping disorder, and arthritis, and the fibro is all throughout my whole body etc. Thanks for your comments and support:>) LOL Carla

    [This Message was Edited on 03/13/2006]
  17. kch64

    kch64 New Member

    Well, even after the thyroid, it took awhile. I recently read that the thyroid is a very slow to change organ.

    Don't know if that's true, but I can tell you what helped me. A few times I went through a lot of muscle cramping and sore skin. (fm symptoms but also thyroid).

    Well the doc I was going to ran blood and said I showed a calcium deficiency and an Iron deficiency.

    Now you need to remember, Iron is toxic unless you have anemia or low iron stores shown in a blood test, so don't take it unless you have it in your blood work.

    However, Calcium is another story. I must have had very low calcium at that point, because it showed low in the blood, and before it shows low in blood, your body starts leaching calcium out of your bones.

    That's why my bones were hurting so bad and my skin was sore, because of the Iron and calcium.

    Those blood tests you mentioned are not for thyroid. You need a thyroid panel with free T3, T4 and TSH. You should go on and look up thyroid. There is all kinds of info on there. Also, look for a thyroid doctor in your area that doesn't rely just on blood work alone. has a list of these docs by state. I would start there.

    If you need anymore info, just post to me. I'll do whatever I can to help.

    Another thing that helped me, was chiropractic (recent as last year) and osteopathic manipulation. these helped so much.
    B-12 shots are worth a try. even if your blood levels are normal on a test. Ask your docs if you can try them. It won't hurt.

    The thyroid is very important if you're going to carry a child. You will miscarry or not be able to concieve if your thyroid isn't properly balanced. It's very important before you try to conceive, that you get this re-checked.

    I hope i've helped in some small way.

  18. cjr2003

    cjr2003 New Member

    Hi :>) Good to hear from you! :>) Anne, you had a child/pregnancy at 47 years old? ! That is absolutely remarkable! AND you had fibro at the time and it went into remission while you were pregnant?! Well, this is the best news I have heard all day :>) T-u for sharing that! That is very encouraging. Now, if I can just get my body to cooperate and "get pregnant"! Doing foster care sounds very rewarding, it really does. That is something to definetly think about. Yes, in many ways, I am ready to go back on a few meds to get some relief even if just temporarily. I had about 5-6 days of good relief when I recently started Lyrica, but after that, I started feeling extremely exhausted. I think the Lyrica building up in my system and the muscle relaxer that they put me back on to help w/ the cyst pain ganged up on me. I have cut back to half the dosage on both meds but just feel wiped out totally. I have thought about the stress I have had most recently too, and I think that is definetly part of it all.BTW, Tabby is still doing better. She romped and played quite a bit yesterday; swatting at all the flies that are accumulating inside everyday :>) Still eating good :>) . . . Plus, ever since about 3-4 months after I stopped bcontrol I have been suffering from SEVERE PMS. About 10 days sometimes before my cycle starts, I get severely tired, and very irritable, an irritable that is just unlike myself. I have heard of PMDD, and really honestly fear I might have it. My moods swing from bad mood to emotional mood to depressed mood to angry mood and back again. I really do not like feeling this way; it is just so not like "me" and I feel it. I grabbed the Magnesium Malate out of the cupboard, I had put it up since we had been trying for a baby. Have never even taken it before. But, from what I have read, magnesium is supposed to be good for PMS and the M.M. good for the nervous system and muscles. So, I am giving it a try, I just don't know what else to do, I really don't. I feel so not like myself.
    My best friend is about to give birth ANYDAY and I am so excited and am looking forward to helping and babysitting possibly in the near future, but I have to get some energy back. Oh - I read the M.M. is supposed to help w/ energy as well. No, haven't tried the guia, have u ?? I have heard if you are really disciplined w/ it and really stick to it that it can be beneficial for some.

    Lots of love, Carla
  19. cjr2003

    cjr2003 New Member

    Hi honey! I am sorry to hear that you have IBS. I have it too, and it can be so troublesome. Just downright annoying at times! I take Zelnorm and it keeps me more regular. Everyone always laughs at me because when I do have to go, I practically knock anyone down in the line of the bathroom, so I can make it to the toilet in time :>) LOL . . . anyhow, so nice to hear from you :>) . . . if you ever need to just "talk" about any "other stuff" going on, you can always post directly to me, I am a great listener. . . sometimes all this "other stuff" in our lives can get so complicated when we have fibro and are trying to just live our lives, that has how it has been for me lately. . . thankyou for thinking of me . . . I've got you on my prayer list too :>) Take care and best of wishes to you always, love, Carla
  20. cjr2003

    cjr2003 New Member

    hello! :>) thanks for the support! Yes, I do hope that my dream of being a mother is fulfilled. Surely the Lord knows my heart and knows how much I want this. I dream sometimes of me being a mother and holding my baby, and in the dream it is so very real, and the feelings I have inside are just so out of this world because I know that this is my child, what I have wanted since I was like 16 years old! thanks for your comments/post. LOL Carla

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