# But I don't WANT Fibro......



## Guest (Nov 8, 2000)

Hello,I usually post in IBS but today is a killer!!!! Mayo Clinic Drs told me I have Fibro and no one has told me much or done anything about it. I don't even know if theres anything to DO??? Ok so I have IBS and arthritis and tennis elbow etc. Tired all the time. COLD all the time. Low blood pressure, Low body temp. 96.2 go figure da de da. I have depression and panic disorder and today I hurt everywhere and I don't know what to do. don't know what is what anymore and I can't go to the DR. as they keep sending me here and there (specialists) and that panics me so bad that it makes everything worse. I'm under a lot of stress this week and am getting scheduled for MORE surgery!!! Will find out when. Just the "rest" of the first hysterectomy that was in 1996. My social worker is supposed to be here today but called as she is due in court and that is running slow. I'm TRYING to hang on but I dunno. Oh, I cannot tolerate aspirin, ibuprofin, muscle relaxants or just about anything. So any advice on what to do???? Sorry for whinning but I SWEAR I'm gonna end up in the psych ward with a break down. Oh and the last few days I'm starting to get agitated out of the blue. I just cannot figure this thing out.I hope not to offend anyone by saying this...but I believe that Fibromylgia is just a name they put on you when you hurt in at least 5 places every day!!! Gonna go cry now..then do the dishes or something.Deb


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## weener (Aug 15, 2000)

Hi Deb:Gee, I am sorry to hear that you are going through such a rough time. I don't know why but the IBS and FM seem to go hand in hand. I am on medication to help with the fm, but I also take warm baths and do yoga and go for walks. The walking is very beneficial. You don't want to do any kind of exercise ie) lifting weights. I've had fm for 14 years now and one of the most important things I've learned is to respect my body, pace myself and take lots of rest. I know that it is hard to do at times, but if you don't you will pay for it later. Diet seems to play an important role too. Don't worry about whining, we all do it here. Thank goodness for this site. The people here are wonderful and we will help you through it as best as we can. Oh, you should see me on my cranky days. Hubby knows to leave me alone. Deb, try to hang in there. Once you learn how to manage this darn syndrome you will feel a lot better. In the meantime, please keep in touch and let us know how you are doing.


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## Guest (Nov 9, 2000)

I too am just finding out about Fibromyalgia. I have been going to a Myotherapist for my sore muscles and she suggested to me that I might have Fibro. I went to my doctor and she said I probably do, but they don't do anything for that. Great. So I have been educating myself through books and the internet and at least feel validated that these things are real. I am learning to respect it and live day by day.


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## Feisty (Aug 14, 2000)

Gosh, Deb, hang in there!! It's possible that after the rest of your hysterectomy, things could change some as to how you feel. Female hormone fluctuation is something else. I know. I had a total hysterectomy 8 years ago and it was the best thing I ever did. As far as the Fibro and the IBS, I have both and I am now a firm believer that it seems to go hand in hand--just like Weener said. I also suffer from almost daily migraines. I've been feeling like #### for so long, too, and Hubby wants me to go to Mayo Clinic and "put it all under one roof". Now I'm not so sure after what you just said. You mean not one of those Doctor's gave you any suggestions on Meds or anything? I'm sure it's all very nerve wracking for you right now, but take it one step at a time. I've found that a nice long soak in warm water (sometimes even "steamy" water) helps to make me feel warm and less tense and sore---and it helps me sleep a little better. I just splurged and bought me some liquid bath and shower gel with the Lavender scent and I love it. Lavender is a soothing, calming scent. Great for muscle aches and tenseness along with the relaxing, soothing benefits. Give it a try. I'm new to this Aromatherapy stuff, but I've found I really like it and it seems to settle my mind some.Good luck. Please be sure you keep in touch and let us know how you are doing. This is a great board.Take care.Karen------------------There is a silent strength within each soul, and that strength is multiplied for those who remember that they do not walk their path alone. Thomas J. Edwards


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## Guest (Nov 9, 2000)

Hi Deb & Feisty,One thing that caught my eye was Feisty saying she had migraines everday. Feisty, are you sure you don't have a yeast overgrowth problem, very common with IBS/FM people? I had a terrible problem with headaches, they went away after a restrictive diet and supplements for the yeast problem. If I eat sugar, it comes back. Try and pay attention to what you're eating and see if sugar is the trigger for you too.Deb, my daughter had IBS and FM and Myofascial Pain Syndrome. I say had, because we like to believe she doesn't have it anymore. In her case, it was her diet, we believe she had food allergies and I strongly believe people do not realize just how badly they can screw you up. It totally suppresses your immune system and opens you up for all sorts of problems. She changed to a high protein, low carb diet and with the help of a few supplements has turned her life around. She is doing great now. Don't give up, just try and find out what works for you. If I were you, I'd pay very close attention to what you're eating. I noticed on a lot of these threads it is not a popular idea, I believe too many people are looking for a magic pill and all it does is mask the reason you have IBS in the first place. I believe FM/Myofascia Pain Syndrome happens because your body just gets screwed up for some reason and I think it really starts with IBS, and IBS I believe is a problem with food. I'll probably get attacked for saying that but in my daughter's case, I believe that to be true.Good luck to you all.Casey


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## Guest (Nov 9, 2000)

Hi Deb,I think my fellow board members have covered everything I wanted to say really well. They are a great group of people. Recently we had a post on everyone's medical regime you might like to read through it to see what some of us do. We all have our off days and this is the place to come when you feel like that. At the beginning it is really hard. I found it confusing but as Weener said it gets easier as you get to understand more. Finding out as much information as you can is a big step towards that.Please take care and let us know how you are getting on.Gillian


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## Feisty (Aug 14, 2000)

Casey West and Everyone, I have tried everything to try and get rid of these headaches. I have not found one food trigger or anything else. I've been checked several times for yeast overgrowth, etc. and have been on some very strict diets, including one a year and a half ago where I consumed only fresh or frozen veggies and protein foods. No fruits, no starches, no yeast, no dairy, no wheat, and absolutely no sugar of any kind. Beverage was filtered water. I was on it for 6 months. It did not do anything for this headache. I have to say, I lost weight!!! Who wouldn't on that diet!!! It was a killer, but I was desperate and trying my best to get better. I've also tried the no chocolate/caffeine thing for a year straight with no luck on that one either. And I'm not a person who consumes much in the line of caffeine anyway, I prefer no caffeine. Caffeine makes me jittery. One thing I did find out, though, is that I need to limit the wheat products and anything with gluten. I feel better and I don't seem to bloat as much when I limit them to about once or twice a week at a maximum. When I consume more, I bloat and feel like ####. I tested negative for Celiac Sprue, so that's not the problem either. I do have environmental allergies, though. Mostly molds and then the tree pollen in the Spring and Ragweed in the fall. Was tested for food allergies the conventional way and nothing appears "out of whack".I'm waiting to hear from Mayo Clinic in Rochester on an appointment. It's been 5 weeks and I still haven't heard anything. I hear it takes forever.My headaches started 18 years ago when I was given a spinal block for hemorrhoid surgery. I continued to loose spinal fluid and ended up at Mayo Clinic where they attempted to patch the hole by doing what they call "blood Patches" (using your own blood and injecting it to cover the area where they think the leak is). The horrible spinal headache went away, but I have had migraines ever since. I trully believe that the spinal block (which was given at the wrong level and could have paralyized me or killed me on the operating table) did some kind of permanent damage to my "neuro-transmitters" or whatever. When this all happened, it also started this Fibro thing. I've felt like #### ever since. And I'm told this is as good as it gets!!! Whooppee!! Something to really look forward to, huh?!I'm always open to considering other things, but it seems like I've tried just about everything there is. Even spent a nightmare of a week at the Diamond Headache Clinic in Chicago---so drugged up I couldn't function. That wasn't a human feeling by any means. It was the most horrible experience in my life. Never again.Sorry, didn't mean to sound so negative, it's just hard sometimes when you know you've tried so much and no results.Take care everyone and keep in touch.Karen


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## shrinky (Sep 14, 2000)

Hi Guys,It's been a while but I am still here and surviving. Although I think that may be debatable at times. ))I have tried all things to get rid of my headaches. I stopped sugar, coffee, and all the rest but found it done no good.I have been lucky lately with them, it has been a few weeks since having a really bad migraine. I hope it stays that way.Brooke------------------B Howes


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## Guest (Nov 13, 2000)

FeistyWow, I'm so sorry, you do have some complicated history there. I would not even venture to guess where to go from here. Your problem definitely seems more difficult than just a simple yeast overgrowth problem. I was only trying to be helpful and I apologize for over-simplifying. I wish you good luck in finding an answer, I know headaches are really the pits.Casey


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## Guest (Nov 14, 2000)

Hi Fiesty & everyone,Interestingly enough I too had a traumatic epidural while having my first born and came down with fibro symptoms after that. It took 10 tries to get the needle in and then it numbed me from the neck down! It should only go from the waist down.So i do wonder if the neurotransmitters get damaged and change the whole body chemistry.well it's anyones guess.bye for now,Sea


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## Guest (Nov 14, 2000)

Hey Deb, I'm sure we can ALL sympathize with you. I was diagnosed with ibs last year and am now diagnosed with cfs and fm. What a great combination....as in not at all. This week has been one of the worst for me. My whole body hurts, my head hurts, my stomach is off, I'm tired but can't sleep...etc etc. I haven't done much of anything this past week because even taking a shower takes all my energy. After I do that I can't do anything else for the rest of the day. Because I can't do much of anything, I can't sleep. So it turns into this huge problem. I'm actually seeing a specialist for fm and cfs tomorrow morning. I just found this site off the ibs board. Hope you're feeling better soon!!! We're all here for ya :z)


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