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I hurt so bad!!!
9 Replies
Dixelanddelight1 - October 2

Sorry so long but here goes....

Back in Dec 2006 I had fallen off a curb. About 3 weeks later I started having really bad headaches to the point I was in severe pain. I went to see my sinus dr thinking it might have been a sinus headache since I had already had sinus surgery a couple years ago. He said everything was ok and checked my BP. It was really high. Went to my GP and he put me on BP meds and sent me to a neurologist. I went to see the neurologist to find out why I was having these headaches. he said i had migranes and kept giving me medications. I knew it was something more than migranes because I havent been sensitive to light, noise or anything of the like. Did several MRIs on my head and came back normal. I went to see an optomologist, my GYN..Nothing there. Got so bad that I was going to work one morning and had a headache and swerved into one lane and almost hit a car head on. Another day had to be brought home from work. Another day had to call my husband and stepdaughter to come get me cause i couldnt finish driving home from work. This neuro refused to put me outta work "just because of a migrane". My husband called and told him if anything happens to me that he will hold him responsible. The neuro sent me a letter in the mail saying that he couldnt see me no more because of the "general threats" that my husband had made.

So I went to another neuro. He also said I had migranes and kept putting me on more medications and took me off the BP meds. I started getting really bad pains in my neck and my upper back and started going into my lower back. Asked for an MRI on my neck and showed normal. They wouldnt do anything w/my back until i got my headaches taken care of. I got tired of hearing I was having migranes cause of other problems i was having w/hurting in my neck, shoulders and back.

I went to see a internal medicine dr and he put me in the hospital for 4 days. They gave me meds for migranes still. I kept hurting in my back and nothing would be done. Got out and on my paperwork they had Migranes and Depression. Only reason they had depression was because i had been on antidepressants and i told them i was not depressed. Well I saw another neuro while i was in the hospital and saw him one time after i got out. He said i was having migranes and told me that my back and neck would not affect my head to cause headaches and told me, (his exact words) "Do not call me just because of a headache". So i never called him back.

I started seeing my chiropractor in may that i have seen for 14 years. Well I woke up one morning and i couldnt move my neck at all. called my Internal medicine dr and he got me in and said that my neck was straight and did not have the natural curve and sent me to physical therapy that did not help.

I called a college that is 4 hours from me that is the best in the state. They got me up there and i had an EMG and NCS. They both came out ok. I went to see a neuro up at the college and he told me i was having tension headaches and not migranes. I then had an MRI on my lower back. He found out that I have Degenerative disc disease, scolosis, bulging disc, and artritis in my facet joints. Ive been hurting by this point throughout my body...meaning head, neck, shoulders, upper back, lower back, hips, legs, having pins and needles in my hands and feet, sharp shooting pains down my hips and into my legs and so on. The dr told me that I needed to go to a neurologist to check on neuropathy or MS, I need to go to a pain dr for facet blocks and go to a rhumatologist to see about fibromyalgia, He said that there is a very very good possibility that I have fibromyalgia because of all of the pain i have and then I have Irritable bowel sydrome and mitral valve prolapse. He said that alot of the patients w/IBS and MVP and the joint and muscle pains i have will have fibromyalgia. I have swelling in my hands, fingers and feet and am always tired even after i have gotten enough sleep for a normal person. I also wake up in the mornings and have a hard time moving or even going. I havent even been able to do the things i used to enjoy. I am only 33 years old.

I have missed more time off this year of work than i have even been able to go to work. I am on the verge of losing my job. I now have an appt w/a rhumatologist on the 29th of oct. I am also trying to get into a fibromyalgia study and see if they can help me.

Does any of this sound like fibromyalgia? I have started getting depressed because I cannot get any answers. The dr's where I live I feel like are quacks and only want what they can get. Does anybody have any suggestions?

I have missed yesterday and today of work because I am hurting so bad its not funny.



islandguy - October 3

It certainly sounds like you have had a rough go at getting a proper diagnosis.
A couple of things to remember...there is no swelling with fibromyalgia and through all my years of having fibro I do not recall (mitral valve prolapse) being a symptom.
You are on the right track for diagnosis as the rhumatologist will either confirm or dismiss the fibro.
Let us know how the visit with the rhumy goes.
Take will find out what it is and hope it isn't fibro as there is no cure only some meds to keep you at some comfort level from time to time.
The flare ups are extremely I am in the middle of one now....
Best of luck.....


Dixelanddelight1 - October 3

Hi Islandguy,

Thank you for responding. If you google Fibromyalgia and MVP together it will bring up a whole list of sites where it shows that the 2 are related. Also another thing that I have that has been said to be related w/all this is endometriosis. I also have that. Google those together and see what you come up with. There are alot of other problems out there that some people do not know that are related. As far as the swelling I am not for sure what is going on w/that. Ive gained at least 60 lbs this year alone since all of this started. I am not for sure if it has been because of all the medications i have been on or if it is another problem.

Thanks again for responding.


islandguy - October 4

You are correct. MVP is an associated condition. If you click on this website it will give you a large list of associated.
Too bad about the weight think as it can be real hard on the rest of the organs of the body. Make sure to keep your heart in shape. My doctor has told me that I have to keep doing cardio exercises to maintain good health. Arobics, swimming , bike riding,etc. It gives the heart muscle some exercise and my pain doctor claims it helps fight fibro.
Odd thing because the more you do with fibro the more pain you get...!!
Medications can and will always have weight gain side effects. Check yours to see if that is what's causing it.
I start with the pain clinic this month and it should be interesting on the suggestions they have for "living with fibro".
Take care and let us know on the rhuemy appointment.


Robin1237 - October 4

Hi -- it's my opinion you have Lyme disease, a bacterial infection usually acquired through being bitten by an infected tick, but there are also other modes of transmission too. Headaches, neck and back pain, pins and needles, shooting pains, IBS, MVP, swelling -- all symptoms of Lyme. The bacteria can do a number on us. Go read at Questions. You can post questions there and people will answer rather quickly.


Dixelanddelight1 - October 4

Hi Islandguy, I wished I could do all that stuff. I went to the gym 1 time this year thinking ok i felt better and boy was i wrong. I didnt do much working out and i woke up the next morning throwing up and hurting all over and had a major headache. The past week I havent been able to walk much cause i hurt so bad. I walk very very slow.
As far as the weight gain my husband keeps telling me "oh your just getting older and your metabolism changes and your gonna gain weight the older you get and you snack alot and blah blah blah" I keep telling him I am not "snacking" alot like he thinks. I have tried losing weight and its not going anywhere. I have never in my life been weighed this and i dont like it at all...Ive always been around 135-140 lbs and now i am 198 last i checked. even when i was preg i wasnt this big. Ive always watched my weight.

Robin, Its not lyme disease. All of this started after I fell...havent been bit by a tick or anything of the sort.


islandguy - October 6

Hi Dixelanddelight1: Well I think I have had enough on the Lyme disease thing. It seems every post I read !!!!!
I know it is tough for anybody with fibro to get any exercise and your body will tell you when you can and when you can't.
I live in a very chilly/humid part of the world and I can tell you that the weather is just flaring me up like crazy right now. I will no doubt have to go somewhere warmer and drier to get any relief from this.
Again I would maybe research your meds for the weight gain and speak to you doctor about it. It is always a concern when people gain weight quickly and it may be as simple as changing one of the medications.
Anyway take care...I am glad to see that your husband is a caring guy. Best of luck and keep us posted.


wendy60 - October 6

I am not sure what you have. I am a nurse, my personal opinion given what you've said here is that you have rheumatoid arthritis. You know you have DDD, DJD and arhtritis in your facet joints. The rheumatologist will do blood work to find out what you have. Please keep in mind that up to 20 percent of people with RA will not show positive in the blood work (like me). I was diagniosed via MRI of my hand joints. Like you I tend to hurt everywhere. If you have RA, it tends to affect both sides equally. If your left wrist hurts most of the time the right one will too, and so forth.
I am a formerly very healthy 47 year old. I went from taking Prilosec daily to taking about 12 pills a day. The meds they put me on for my RA have given me hypertension. My internal medicine doctor and my rheumatologist were not treating my pain effectively so I asked for a referal to a pain specialist. The medication he prescribed makes my BP zoom up. I called and told his nurse what was happening, she called me back and said he had never heard of such... ya know how docs are, if he's never heard of it , it can't exist. To,ld me to stop taking it but didn't offer me anything else to take. Now they think I am just after more powerful pain medicine, which I'm not I just want pain relief... just like you do I would imagine. I want answers too. I thnk I have FM too, it often goes along with autoimmune disorders as you know. Good luck with finding answers, I hope your docs have a better bedside manner than mine do.


sunglo - October 7

dixie..understand your a bad point right now myself...i was first thought to have a pituartory tumer then when to all of your symtoms...the yaer before had foot drop then bells palsy...sleep is verry bad for me..i was but on a speeping pill but not a peace of life jus cutt away...i am on my second year now and i have heard the drug lycria is good..i know of several on it..i also went thru extreme weight gain ..hopfully there will be a cure for it so hang iin there


TNUtammy - October 7

Dixie, your weight situation sounds exactly like mine. I weighed 108 lbs during high school, but that doesn't really count because everyone beefs up eventually like your husband said. But "beefing up" is usually only 20-25 lbs and not 50-75 so you can call him on that one. Through college I weighed about 130-140, and it just gradually went up from there. Like islandguy has said, almost every med they put us on is going to have weight gain as a side effect, so this is where most of it is coming from. After being on these meds for a few years I went up to 185, which is a lot on a 5 feet tall frame. I couldn't stand it anymore and despite all the dieting, I still just couldn't lose the weight. I've even had experience with loosing weight as I was a pretty overweight child. I actually lost about 50 lbs when I was in middle school, which helped me to have a great experience in high school until this condition came in to play. So at this point, I decided to start eating only 2 small meals a day instead of 3. This helped me to stop gaining weight at least, but I wanted to lose so I had to take it a step further. I replaced another meal with a glass of juice and went to only 1 full meal a day. This was the only way I could lose any weight at all, and ended up getting down to 165 lbs. Please do not try this, as it is not healthy. I simply wanted to prove to myself that my body was not the same as that of a normal person. So I went back to eating normal meals and again gained my way back to 185 lbs, only this time it did not stop there. When the scale hit 194, I knew something was wrong. I went to the doctor expecting that they would run tests and still come up with nothing just like they had all the times before, but this time they actually found a slight problem with my thyroid. I've been on a low dose of synthroid for about 2 months now and weigh about 190 lbs. This is a very slow process and I'm not sure how much I will end up loosing, but anything just to keep me from gaining weight at this point is a major plus. I know that I had to have had this problem for a while now, but for some reason it just took years to manifest into something that would show up on a lab test. While this is not the cure for my fibromyalgia, it is nice to have had something that the doctor's could find in a test for once. I don't know if this could be your problem, but it's a good thing to keep in mind. Even if your thyroid tests fine now, I would still have them check it every few years. The one thing I have learned with this condition is that you just never know what to expect. At least it sounds like your husband doesn't mind the weight gain, so consider yourself lucky! You may not be happy with your body, but he seems to be so my advice is just to enjoy it.



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