Hello, New To The Board

Discussion in 'Fibromyalgia Main Forum' started by Ishy75, Jun 4, 2003.

  1. Ishy75

    Ishy75 New Member

    Hi all, I've been peeking into your message board for a little over a month now and thought I'd finally say hello today.

    I've been ill for about 6 months now and it's been slow going for me to find anybody to diagnose me. I've been in and out of the ER with severe dizziness/fainting feeling and have had tried numerous medications, all failed or made me feel worse. I have pain just as everybody else does here but at times it's the dizziness, more than likely from anxiety, that keeps me down. I am a type 2 diabetic (well under control) and was first told I just had neuropathy. That didn't settle with me because of the research I did online and the pain that I was having so I asked my doctor about CFS. He said more than likely its FMS.

    I've had basic tests run but he never seems to focus on the FMS now that he has diagnosed me with that. I am glad to have a doctor that believes in it but I don't think he knows very much about it. My back has severe spasms which he can see by just looking and only seems to focus on what he can see. I am so frustrated and so depressed because everytime I leave his office I'm disappointed. I've expressed to him how severe the anxiety is, how I rarely want to leave the house now, how hard it is to care for my 2 children and yet all he would do is put me on vioxx and two weeks worth of klonopin until "your back feels better." (Um...what about the rest of me???) I have found that the klonopin works very well for the anxiety and I mentioned that to him. He wouldn't prescribe anymore or anything else at all until I see a psychologist that can verify that I need something such as that.

    My doctor is a very good thorough doctor and I do like him but he's not doing anything for my FMS. Now he is on vacation until Monday so I can't see a psychologist until he comes back and orders that for me. It's crazy. I can't function most days because of the pain and dizziness, so here I sit until Monday. I've done more waiting in the last 6 months then I ever have before. I'm in Wisconsin and there aren't many doctors in my area that deal with FMS without traveling quite a distance to see one. Today I am just at my wit's end and sooo tired of waiting.

    This is all so new to me and it's been very hard to deal with. I feel like a failure most days. It's so hard to care for my 5 and 9 year old. My husband doesn't understand and thinks I enjoy laying around in bed all day. I felt comfortable enough to write this here to you all because I don't have anybody that really understands here at home. My thoughts have been scattered around here a bit and I do apologize for that. What a way to introduce myself!! lol. I'm truly glad you all are here. It was the only place I could come and vent that I would really be understood.
  2. Shirl

    Shirl New Member

    Hi Ishy, welcome to our world, I don't have the dizziness often, only if I have a severe sinus attack or an ear problem. But it could also be due to meds. You need to check with your doctor or pharmacist about this first.

    I do get anxiety, but no dizziness with that either. Just that jumpy feeling with heart racing and sweating.

    I also had spasms in the back, my husband could see the knots, and would rub (it hurt very much) them untill they would smooth out.

    I take Pro Energy (Malic Acid and Magnesium Glycinate) and ZMA (zinc, magnesium and vitamin B-6), it has almost eliminated the spasms unless I do work that will cause the muscles to tighten up, then I will get them again.

    You would need to check with you docotor about this, as I don't know if anything in them could cause a problem with Diabetes. Both are sold here at Pro Health.

    It is difficult to find doctors that deal with FM/CFS, most simply don't know what to do with us.

    We have several members that are diabetics here along with the FM, and I know they will be glad to share what they are doing to help themselves.

    Again, welcome to the board...........

    Shalom, Shirl
  3. Ishy75

    Ishy75 New Member

    Thank you for the warm welcome. Right now I'm not on any meds at all. I lost enough weight because of the stress of all of this to be taken off of my diabetes meds. I was on Nexium for my tummy but I've gone off of that too. Anxiety and stress can cause many things so I just assume the dizziness is from that. I've been checked for inner ear problems and everything else but still no explaination. I will check with my doctor about what you suggested. My husband and I don't get along really well since all of this started so I doubt he'd rub my back for me. He hardly even knows I exist anymore. So much for the "in sickness and in health" vows huh? lol. Again thanks for the suggestions. I'll let you know what my doctor says and if it helps.

  4. Cheri_Lea

    Cheri_Lea New Member

    Hi Ishy,
    I am new here to. This is my first time writing on the board. I have those nice dizzy spells you are talking about. They are not fun. I have been to so many doctors for this. A neurologist told me that the dizzy spells was from an abusive relationship or from an abusive childhood. I have not had neither of the two. That doctor sent me to a heart doctor. He found nothing but an extra heartbeat, but no reason for the dizzy spells. Test after test came back normal. I was sent to doctor after doctor. Well I finally got to go to a Fibro doctor. She's great. She started me on meds but to early to tell if they are going to help me. I've only been on the meds for a few days. You need to find a Fibro doctor. I am not sure where you live but finding one was very hard for me to do since the other doctors was not wanting to help me do any thing. I have also found lots of support in the Fibro Chat room. Sign on some time and maybe we can chat. I hope everything works out for you and I wish you the best. Take care, Cheri_Lea
  5. Ishy75

    Ishy75 New Member

    Hi Cheri,

    I'm so glad I'm not the only one with this crazy unexplainable dizziness. It makes me feel so much better to know I'm not alone. All of my tests came back negative also. I love to chat. I haven't visited any chat rooms in a few years but might pop in and see how it goes. Did your fibro doctor give you any inkling as to why you have this dizziness and what could be causing it? Or is it just another mystery to this for some of us. I will be talking to my doctor Monday and once again I will ask him for more help finding a fibro doctor. I'll keep you posted and look forward to chatting with you.

  6. elaine_p

    elaine_p New Member

    I had dizziness at first, too--even sitting down. Then my counselor suggested I drink more water (which we're "supposed" to do anyway). Since then (5-1/2 years ago), I don't have dizziness very often.

    If you want to search for info, look for Orthostatic Intolerance and/or hypovolemia.

    At first it takes discipline--I had to make myself drink glasses of water between cups of coffee or pop. Now I crave water and drink enough without even trying.

    I haven't tried many meds, so don't know what effect they'd have on this.
  7. Ishy75

    Ishy75 New Member


    I too was told a few months ago to drink plenty of water. That didn't help me at all either. I still drink bottles of it daily and still the dizziness is there. Thanks for the help. I'll research the things you suggested.

  8. GooGooGirl

    GooGooGirl New Member

    I get the severe dizziness too. Sometimes it's so bad that I have to hold on to the walls as I am walking. It just comes out of nowhere and can happen if I am just sitting still too. I also have anxiety and take Klonopin for that when needed and also every night to sleep.
    [This Message was Edited on 06/04/2003]
  9. Ishy75

    Ishy75 New Member


    I figured if I came here I wouldn't be alone with the whole dizziness thing. It is that horrible for me as well. I also have to grab onto walls or completely stop what I am doing because it is that severe at times. Does anybody know the reason we get this?? Most days it keeps me down all day. I can't even go into stores anymore and rarely leave the house because of this.

  10. kmelodyg

    kmelodyg New Member

    You are definatly NOT ALONE!!! I have had bouts of extreme dizziness. And it was always associated with my anxiety attacks. I think gettong in to see a Psyhiatrist will help alot. They specialize in stuff like this. And medications and counseling should help you alot. It's no wonder that you have been feeling this way. It seems like you are overloaded with stress. You are worried about taking care of your kids, your relationship with your husband, and how you are going to get better!! That is a big load!! I find that breathing techniques, relaxing techniques, and mediatation can really help when you are panicking. Please don't hesistate to talk to us either. You can e-mail me anytime, if you need a friend. My e-mail is in my bio. Good luck to you and keep in touch! My prayers go out to you.

    Big Soft Hugs,
  11. Ishy75

    Ishy75 New Member


    Thanks so much for the warm welcome. It is so nice to know that I am not alone in this anymore and that most of you here have or are going through the same thing. I believe the dizziness is from anxiety also but who knows with this crazy DD. I used to have more severe spells where I'd get so dizzy I'd almost faint. I was so afraid to be home alone with my 5 year old. Sometimes I would have to have people come over and stay with me. I was so afraid of fainting in front of him and him not knowing what to do. The stress is from not knowing what the heck I had all of this time as I know most of you can relate to.

    As soon as my doc gets back from vacation I am going to see a psychiatrist if for no other reason then to get some meds to help with the stress and anxiety. This is by far the most understanding awesome group of people here. Thank you so much for listening. It's nice to know I'm not alone anymore. Big Hugssss.

  12. Shirl

    Shirl New Member

    Hay, Cheri Lea, you got in under my radar, so heres a big welcome to you too.

    I sure hope you ladies find the reason for that dizziness, the few times I have had it makes me very sad for you.

    I will take the FM pain instead of that dizzy feeling or that darn fatigue, they are the worst......

    Elaine, I have felt so much better drinking water too. I drink half my body weight in OUNCES of water each day, and also a 1/4 teaspoon of Sea Salt. It has helped so much with brain fog and also with the sinus infections too.

    Ishy, I do hope we hear from you often, you sound like a nice lady!
    My husband used to get impatient with me too, but we have it all worked out and he is now my biggest supporter. He found out that if I am feeling good, it makes life with me a whole lot easier!

    Shalom, Shirl

    [This Message was Edited on 06/04/2003]
  13. Annette2

    Annette2 New Member

    Welcome to the Board. I have a few suggestions. First, you might want to look for a good Rheumatologist who understands and treats fibromyalgia. You can tell by one appointment if they do. You might also ask the person who makes the appt. for you if that doctor treats FMS patients. If she says "no", then say goodbye and call another doctor. If you can't find a Rheumatologist, you might try a Pain Clinic.

    Regarding the dizziness, it could be anxiety, but it could also be low blood pressure. I have low blood pressure and if I turn my head too fast, or get up from a chair too fast, I get dizzy spells. A lot of people with FMS have low blood pressure and it could be that. If it's not your blood pressure I'd suggest seeing an ENT physician and having your ears checked. Your vestibular system is located in your ears and something could be off there.

    I also think it's a good idea to talk to a psychologist. Not because you're "crazy" or "making this thing up" - but because just having an illness like this can cause you to feel anxious and/or depressed. Just talking about it with someone who is impartial can be a relief. I hope this helps you! Good luck!

  14. darlamk

    darlamk New Member

    Hi Ishy, My husband is from Racine and we now live in S.D. so I really got excited when I saw your Go Pack! in your bio. I'm not sure if you mentioned (fibro fog :) but have you had your ears checked, head CT, etc for the dizziness? I agree that anxiety can contribute to chronic dizziness but be careful to check everything out to make sure a diagnosis is not overlooked. Sometimes because we have the diagnosis of FMS it is easy to blame all our symptoms on the FMS/CFS and not investigate each and every symptom. I hope you find some answers and welcome! You have come to a good place for support and information.
    Best Wishes,
  15. Ishy75

    Ishy75 New Member

    Thank you all for your help and for your suggestions. I have had a head CT and have had my ears checked. I've done everything to try and find the cause of the dizziness. If I could get rid of that I think I could function a whole lot better and then just concentrate on the pain which is definately not as bothersome as this dang dizziness.

    And a great big hello and hug right back to my fellow cheeseheads!! Once Monday rolls around (anybody else ever get tired of waiting??? Yawn! lol) I hope to finally get somewhere with this DD. I'll ask my doc about everybody and anybody you all suggest. lol. Something has to work with him sooner or later and if it doesn't I'm going to bonk him over the head until I get the help and referrals I need!!!

    Thank you all again!! Hugssssss

  16. pam_d

    pam_d New Member

    I'm glad you are here! I do not suffer from the dizziness, but I am one of those people with FM who does suffer from a whole lot of neurological symptoms (tingling & swollen-feeling extremities, muscle twitching, etc.) rather than extreme pain.....and I can really empathize with you, because doctors are often ready to at least talk about PAIN, but shake their heads & throw up their hands when you want to talk about these other strange symptoms. They really don't know what to do with you! And personally, I agree with Shirl----painful days are far easier for me to get through, than the really uncomfortable days when the neuro symptoms are at a fever pitch.

    I know dizziness makes it almost impossible to accomplish even the simplest things, so I hope you find an answer or medication that helps you. Come here any time to vent, we DO understand here & are always willing to listen (& help if we can)!

    Hugs & hope you feel better,
  17. Ishy75

    Ishy75 New Member

    Thanks Pam for the warm welcome. I seem to have more of the problems such as you do. While I do have pain through out my body especially from the waist up and my knees, the dizziness is the killer for me. I also experiance tingling and numbness here n there and everywhere. lol. How else can it be explained!! I keep saying, is it Monday yet???? So I can talk to my doctor especially now that I've gotten so much advice from all of you. I've browsed around online and in my local area there are no specialists in the FMS field. I get motion sickness in the car now, though I never did before, so traveling pretty much stinks for me. lol. Does this never end?? Ya get told ya have FMS and then that's it. The doc just leaves ya hanging. It's so frustrating. Thanks again for listening and for all of the advice. Big hugssssss

  18. Cheri_Lea

    Cheri_Lea New Member

    Thank you for the wonderful welcome. As for the dizzy spells, my dr. never really said why I have them. But I have talked to several people and they say that the dizziness comes along with Fibro. I have been getting really depressed lately and I hate it. I think it finally sank in that I have Fibro and that my children can get it also since I have it. The dr. told me that some where along the way some one in my family had Fibro. I emailed my aunt on my fathers side and asked her. I havent heard from her yet........so I am waiting on that news. Dads family I was never around since they lived so far away, so I dont know alot about thier background. As for drinking water, I have been drinking lots of water the last few days since I am also taking fasten(spelling not sure of LOL) for weight loss. It makes my mouth and throat so dry. But I dont eat alot. Which is a good thing, because I'm over weight anyway. Take care all and have a great week end : )~
  19. elaine_p

    elaine_p New Member

    Ishy, if drinking more water didn't help you it may be a waste of time to look for info on hypovolemia. I've only read one article on it, and it just said to drink more water. (Hypo = low, volemia = blood volume; their theory is that drinking more water will increase your blood volume.)
  20. Ishy75

    Ishy75 New Member


    Sorry to hear that you're so depressed. We can all relate to that here. There are some days I wonder how I make it through and usually end up crying the whole day long and have huge swollen Garfield eyes the next morning. Not fun, but nobody ever said this DD was. I know how you feel about your kids and how much you worry about them getting it. I worry about the same things. Thanks for letting me know that dizziness is just another wacky symptom of this. I only wish mine would let up as I have it almost always 24/7 which as I said keeps me pretty much in bed. I'm so glad though for my laptop and wonderful people such as yourself. Big hugsssss to you and I'll keep you and your kids in my prayers.