Hello, Im not new to the forum but I am new to fibromyalgia. I am 30 years old and my problems started at 21. If you count the painful periods before 21. I have alot to learn about this, Im taking lortab and over the counter meds and occasionally flexeril. Ive done research since finding out about this recently. I started having flare ups after I delivered my first child. I had an epidural and back pain ever since. Some days it feels like my muscles are being ripped from the bones. I want to know how ya'lls flare ups started. Alot of nights I cry til I fall asleep my back my hips hurt so bad. I have a headache at least once a week. I do occasionally get pretty depressed, meds help with that though. I dont remember a day in the last 10 years I havent hurt. Do yall hurt every day? How did your symptoms start and what triggered it? Have you been put through the ringer with tests all for nothing? I was told to keep a daily diary and rate the pain and what meds I took and what helped? Have any of you had to do this? Why cany doctors just come out and say this is your problem instead of beating around the bush and suggesting it is a great chance this is it. I researched and found things the doctor hadnt yet. I researched and just bawled in front of the screen, it described my life, anyone else been jogged around on true diagnosis? I dont know why they cant just say this is the problem or its not and this is what we are going to do instead you are a human guinea pig.
Sorry Im so full of ?s, Have you completly given up teas and sodas? How do you treat the blood sugar spikes? I sometimes just about pass out from them,get all clammy and shaky and start seeing spots. What are some of the things you do to help those better, so far I havent found anything that works for mine.
The chest pains and anxiety, anyone got any tips on those. I tell my husband alot my chest hurts, he just doesnt know how to help.
Hi razn, welcome to the board. I was diagnosed right off the bat about 4yrs. ago, so I can't relate to the multiple test problems. I can however throw in a couple of opinions about some of your other questions. When I was younger (much younger....late teens early twentys) I use to get those weak clammy ready to faint seeing spots episodes. I was at the time about 90-95 pounds and of course eating was not a priority. I did eat a lot of sugar (my favorite food group) but these problems happened even when I did eat properly. I figured out they were probably from low blood pressure along with the lack of proper nutrition. I have even passed out on an x-ray table when having tests run after going back to the ER after having my second child. Those very symptoms started happening when I was standing for the X-ray and the next thing I know they had me on the table and putting cold rags on my head.
I can also relate to the IBS, I take a drug called levbid and try to watch my diet of course. It helps and it was prescribed by my gastro doc.
Just a thought I had about you saying it feels as if the muscle is being ripped from the bone. I have heard that describe a disease called polymyositis which is a disease of the muscles, has your doc tested you for that? Just sort of picked up on that phrase you used.
I'm sure you will get lots of good info from others on the board. Again welcome.
Razn, I went through a lot of testing, therapy, MRI, pain clinic, etc before I got a referral to rheumy. The reason they test for other things is because some illnesses can have the same symptoms as fibro but be treated, like thyroid imbalance. So they have to see if you have one of those problems before saying it's fibro. Fibro is a exclusion syndrome because drs can only confirm fibro when they rule out (exclude) other possibler causes.
I can certainly sympathize w/IBS. I carry immodium w/ me but Pepto does nothing for me anymore. I grew up lactose intolerant and I wonder how large a % of people w/ IBS are lactose intolerant as well. When my family goes for a trip anywhere, my hubby knows when I say "I need to stop" he needs to get to a bathroom quick!
My rheumy thinks my fibro was triggered by repeated injury to my back. had minor injuries a few times as a kid (pulled muscles, etc) but nothing serious. Then between 1991 - 1999 I was in multiple car wrecks (2 T-Bone, 7 rear end) plus falls at work 4X, so my back has really had it bad. The last accident was in a parking lot but I was sitting beside my daughter in the van seat and I saw the SUV out of the corner of my eye and I twisted around to shield my daughter, never thought just did it. The guy hit us hard enough we could not open the sliding door, my daughter (2 1/2) was screaming and my mom was concerned because I had blood on my back. The cop jerked the door open and asked if we wanted him to call EMS but mom said we'd just drive over our self but he offered to go with us. Now the parking lot we were in was literally at the bottom of the hill from the hospital, but you had to go around to get into the parking lots. After the dr checked out my daughter, I let him look at me, did x-rays and no visible damage to bones. However, you could see swelling in my back around the shoulder joints, etc. I missed 2 weeks of school & even more from work. Was on bed rest for the 1st week because the dr believed I tore the muscles some. And my back was a mess, they just cut my shirt open and lots of pieces of glass fell on the floor. The window had shattered but because of the way I had turned, my daughter only had a small scratch on one arm, I could not lie on my back or sit back for about 2 weeks, until all the little cuts healed completely.
I tend to ramble sometimes, hubby hates it.
But no 2 people will have the same cause or same response to the meds or the fibro. We don't even know for sure what causes fibro but the "experts" believe injuries can lead to fibro.
I think I have been tested 4 poly. I can totally relate to the episodes of passing out, Ive done that in walmart, you cant even go to a resteraunt because you dont know if youll have to haul it to bathroom in middle of the meal or before you pay. Always have to know where bathrooms are, never go anywhere new. It doesnt matter either if I eat right or eat a little junk, I still have the clammy weak episodes, if I start seeing spots I have to stop immediatly because I know Im fixing to pass out. Its nice to know someone else understands the very things Im going through. I had just about decided I was crazy.
I am not new to the fibro but am new to this website. The fibro can also be caused by a virus that has laid dormant for a long time, an injury like the last person said or by exercising. I now have arthiritis setting in some of the trigger points which makes it much worse. I use to be so active, work full-time, I was a workaholic and now they have told me it would be in my best interest not to work. I am also embarrassed to say that I am bipolar which I was diagnosed with about one year ago, but was being treated for depression for about 20 years. My pain management doc tells me when I am tired to go to bed. If I hurt go to bed. The rain and the cooler air make it hurt more. Not exactly what you want to hear when I use to work like I did and then would come home, work out to Ta Boe, Advanced for an hour, then ride my bike 14 miles everyday.
My therapist is trying to help me get through the stage that what I did before was my old life and this is how my new life is now. I have to learn how to accept it. I haven't made it to that point yet. They believe mine started from to much exercising and a virus at the same time. So I guess really anything can make it happen.
I keep a journal and try to write in it every day but lots of days I forget due to all the meds I take for everything. There are to many interactions. My shrink doesn't like to listen, he only likes to write prescriptions.
Sorry if I have rambled on to much, but I know exactly how you feel with the fibro and it does feel like muscles are being ripped right out of you. The fibro has a lot to do with the deep tissue and muscle in your body.
Did your doc happen to tell you how many of the trigger points you have the fibro in?
Last edited by Jenn4508; 07-02-2007 at 01:10 PM.
Reason: wrong sign off i get confused
No my doctor says as little as possible, thats what makes it even more frustrating. The only thing for certain we talked about was that I started complaining after the epidural, I started with mild pain the day after and its just gotten worse. Alot of doctors dont want to listen its easier to write prescriptions, your right. Thats the problem now. Doctors see so many people they try to get you out as quick as possible.
My back hurts on a daily basis, my neck hurts sometimes, I have headaches alot ( excedrin migraines are pretty good to be otc) my hips hurt not the bones the muscles around the bone, like lower butt cheek area if that makes sense. I have chest pains that go to my arm and sometimes I swear Im having a heartattack. My toes and fingers go to sleep. I wish I could get my husband to understand this isnt all in my head, some days I feel great others I wake up hurting. I know how you feel about adjusting to this new life. Theres alot of things I used to do but dont anymore. I dont mind the rambling, I need to hear how you guys live and cope. I need to hear the rambling.
I was dx about 6 months ago after a car accident along with a few other issues (but they belong on other boards, I say that because I have fallen apart my husband jokes around that my warranty has run out haha He is very supportive and has put up with alot of drama with me.). But I understand the muscle pain somedays it feels as if a pacman is eating away the muscle and to pick up a little sock is too much. I also have been told I have IBS which was dx long before the fibro was dx. There are alot of other diseases that come along with fibro. I understand how frustrating and expensive this syndrome can be. I was also put through all kinds of tests. And yes they do them to rule out anything and everything. But find a good doctor who will work with you, so you are able to lead the best life you possible can, My Pain Management Doctor has first started with getting enough sleep and helping address the pain. Each patient with fibro is different and no two plans are alike. I hope it helps knowing you are not alone. regards, Gizmosmom
The first thing I would make sure of with your doc is that he/she actually believes there is such a thing as Fibro. There are many docs out there that do think it is all in your head. There are many test to rule out other diseases such as MS, Lupus and such. With Fibro there are 18 trigger points that if pressure is applied to them, it does cause pain. Some days certain points will hurt and other days they will not.
When I finally found a doc that actually believed that Fibro was a disease after testing out other diseases. He did find that I had the Fibro, Hypermobility, flat feet and scoliosis. When they do the check with the trigger points if you have 11 of the 18 trigger points with tenderness or pain that is how they decide you have fibro. When they tested me I had 18 of the 18 trigger points with pain. Some of the trigger points hurt more than others. Sometimes, 2-3 of them don't hurt at all. You have to understand though everyone is different. The main thing is to have a good relationship and trust in your pain mangement doctor.
Sometimes you will make plans to go and do something for later in the week and when that day gets there you will not have any energy or you will be hurting. You will need to learn to explain to your friends and family that you are very sorry but you are not having a good day and will not be able to make it. My doctor advised me to save my energy for the important stuff in my life. My son plays ball so I make sure I am available for that. It hurts for me to drive long distances but my grandmother lives with my mom 85 miles away from me now. So every weekend, I drive down on Saturday, get up on Sunday morning to bring my grandma back up to where I live so she can go read at church (she is 90 years old) when she is done reading, I drive her 85 miles back to my moms house and then later on Sunday afternoon, I drive the 85 miles back to my house. Usually by Monday I am unable to do anything but rest. But it tickles my grandma to death. That is the important stuff that I save my energy and strength for.
It has been very hard for me to learn to say no because Fibro is not a disease you can see so a lot of time people think you are just making excuses. I have lost many friends and family members b/c I had to say no. I guess they didn't care enough about me but only about themselves.
Feel free to let me know if you have anymore questions.
I suffered in pain for years and at first, only my mom believed something was wrong. But my mom had neuropathy so she understood hurting but not being able to "see" the cause. In 2005 my PCP told me I had mild scoliosis after doing x-rays because of my back pain. Said it wasn't a really badcurve but was in the worst possible spot to cause pain & numbness in my legs. I literally cannot lie down on a flat surface for more than 1 minute without starting to hurt so bad I am in tears. When I had my MRI, they played music to help cover the sounds of the machine (headphones). Before the 1st song was 1/2 over, I was already in so much pain I was crying. That pain is totally positional so once I was able to get up, the pain was totally gone in just a couple minutes. But my PCP decided to send me to a pain clinic as well to see what could be done to help me lead a more "normal" life with less pain. It was the pain clinic that raised fibro as a possible cause so I asked them for a referral to someone who could tell me if that was the reason for all my pain.
They had me at the rheumy in less than I week and my 1st appt was about 1 1/2 hrs. At first he just asked me questions about my pain, what made it worse, what helped, what my life was before pain, etc. Then he did the basic exam and then checked for the trigger points. I had 17 of 18 at very noticeable levels. On some he could barely touch me and it hurt really bad. I was trying not to show my pain but he recognized the sharp intake of breath as indicators of the pain but that I was trying to cover it. Before I left his office I had a Rx for a muscle relaxer far stronger than what my PCP had given me.
Anyways, he also gave me handouts and that was my intro to fibro. He included web links for *****, Mayo Clinic, etc. My girl had gone with me because it was summer and school was out. When I got back on the bus with her, I literally started crying. We knew this driver real well and she asked if everything was ok. My daughter looked at her and said the same thing I had told her jsut a few minutes earlier. "I'm crying because the dr knows what's wrong with me and I'm not crazy, I have a real illness".
When I talked to my hubby that evening on his supper break (he worked 2nd) I started crying again. So our daughter took the phone and I remember her saying "Mommy's crying because she's not crazy and the dr knows why she hurts". Last month when the SSA judge said my application for disability was fully approved, I broke down crying again. It is sucha relief to find out you aren't crazy and that you have a real medical problem and are not a hypochondriac. Same thing with finally getting the disability you deserve whan you can't work.
This FMS is a very frustrating condition to get diagnosed. I empathize with you totally. You've had so many good suggestions so far. I wanted to add something, as well. Many FMS patients also have hypoglycemia. Refined carbs, sugar, and caffeine aggravate hypoglycemia and can cause anxiety/panic attacks when consumed. Based on what you were saying, I'm wondering if you have hypoglycemia and if you would benefit from removing these offending food items from your current diet. In the chronic stages of hypoglyecmia, you can experience diarrhea (IBS, for instance), which will improve greatly on a sugar- caffeine-free diet, no refined carbs diet. When my doctor put me on this diet, my IBS disappeared and my body had a chance to recover from some of the hypoglycemia-caused symptoms. I am no longer anxious and jittery.
How long did it take you to get your SSD? Were you initially turned down when your first filed? I have heard that most people are turned down on the initial claim because they figure nobody will fight for it. I am on the second stage (appeal) and my attorney feels like I have a really good case. I have to believe him as he does not get paid unless I win my case. Any help would be greatly appreciated.
I havent filed for it, you must be talking to the woman who posted earlier. What kinds of foods did you cut out of your diet to improve the hypoglacemia?
I am so sorry if I posted to the wrong comment. I get very confused sometimes and I just want to try and help people. I had some TIA strokes about a year ago and then was diagnosed with bipolar. With all the meds I am on, I get really confused sometimes and try to help others so much I sometimes mess up. Please forgive me to all in this thread as I am very new to this website. This is the first I have heard of this hypoglacemia so I would love to hear more about this.
I know most won't believe this, but with the meds I take I really don't eat much at all but you wouldn't believe me if you saw me or I forget to eat totally even sometimes for a couple of days at a time. I will drink diet soda through out the day but that is about it. Maybe toast sometimes.
I may eat a full meal once or twice a week but other than that, I don't. I am just not hungry.