3 years RNY, still trying to be diagnosed w/fibro
Some of the pain started years before, and I was always told it was tendonitis in my elbows. Then I got bursitis in my shoulder. Now the last year, I've been getting searing pain down my thighs. It's like someone is trying to rake out my bones and muscles, shredding them with sharp hot knives. I also get what feels like shin bruises or shin splits. I can't lay with out anything between my knees or it hurts and will bruise.
I herniated 3 disks 12 years ago, so attibuted the pain and sciatica to that, but after talking to others about fibro, some of it fits with the symptoms too. I also get a piercing pain thru my groin - I usually think it's a UTI but it's happening several times a month and it doesn't always test as a infection. It's like a arrow has shot thru my lower back into my front groin.
I've been loosing my memory horribly. It's quite commot to forget something I just said to my kids. Alot of the time I am in a fog, and so spaced out and dizzy, I scare myself. I've even blacked out while driving (that put a stop to my driving) things will feel surreal, like I'm in a total fog. I get migraines and have had 2 CT scans and they look ok.
My legs or sometimes my whole body feels like jello.....I can sleep 16 hours a day sometimes.
I've been tested for MS, and lupus, and now seeing a neurologist for a crap load of more tests. I have started Lycria but that doesn't seem to help and the only pain killer that works is Tramadol (sometimes) doctors have stopped gioving out Oxy and other narcotics around here.
What do you think?
Wow you do have alot going on and that is one of the big problems with fibro is it is so hard to diagnos. There are so many different symptoms, yours could be fibroand it could be a hundred other things. The main issue for most with fibro is muscle pain, it feels like the worst case of flu everyday but it never goes away and when it flares it's even worse. There is also a fogginess but not to the point of passing out that I'm aware of but I'm no doc. Sounds like seeing a neuro is a good start and yes they will test you for a million and one things because fibro is a disease of exclusion so they have to exclude all these other things before they can say ok looks like fibro. You might also try a rheumatologist or pain specialists too they sometimes deal with fibro too.
Have you had your labs done every few mos.? It could also be vitamin deficiences, that can cause alot of unusual symptoms. Also have you been checked for intersystial cystitis? It feel like a UTI but won't show as one because it is a bladder disease but not an infection. This is all going to take time but try to hang in there until they can sort it all out. There are other narrcotic drugs that they should be able to give you but yeah I understand they can be cranky about drugs. I tried lyrica and it didn't do much for me either I now take cymbalta and it helps some but I also use a fentenyl patch for all my pain. I wish you luck and hope some of our other folks will come on and have more info for you!
Fibro is hard to diagnose. Usually you are only "diagnosed" (for lack of a better word) with Fibro when you have at least 11 of 18 tender points and your problems cannot be diagnosed as anything else.
If you think it might be Fibro, you should see a Rheumatologist who will check you for tender points and other symptoms. He or she will then be able to tell you if you are likely to have Fibromyalgia.
I hope you get some answers soon. I know how hard it is to live with pain and not have any solid answers as to why it is happening.
I was diagnosed with Fibro 12 years ago. Suffered for about 5 years before that. One thing that will help alot is cutting gluten from your diet. I am having RNY surgery Monday and along with my new kind of lifestyle, I am going to cut gluten out of my diet. I do hope you will do some research on this and give it a try. Best of luck to you!
Tess 
Hello, Wow, I haven't been on OH much the last couple of years. Had my DS in May '09. Gained a few pounds over the last 3 months all of a sudden. Have to get back to basics, mostly protein and water. No problem with water. But I had no idea there was a fibromyalgia forum. I was diagnosed with fibro in June '12. Have had symptoms for just about 20 years. Chalked it up to the 2 herniated discs I had in '95 before a severe viral infection also that same year. Pains all over at different times. I have been plagued with shin splints a lot too. I don't know why is that. Have lots of pains in my legs from hips down at different times. Arm pains come and go. Left hand warmth and pain. Yes, it is all over. And the fatigue horrible. But, listen to this I just started a new med call Nuvigil. I do have sleep apnea. I asked my pulmonologist about this drug and he prescribed it. The insurance company needed to get the information from my c-pap machine. They downloaded the disc for information. And I was approved. It is a mild upper, and it does keep me going. Yesterday I did not need a nap. Usually I took at least 2 naps a day. Had a very mild left eye pain and temple pain on left side only. No other horrible side effects. I told my boyfriend when I get back from Michigan visiting my ill mother, that maybe I will do some housework. I will have more energy. Now just concentrating on what to pack and get my medical reports typed up. I also take Tramadol and it does help me 100 mg. 3 times a day. I am on gabapentin for nerve issues 900 mg. 4 times a day and that helps. I am also on Effexor and have been told that is good for fibromyalgia issues. Been on those 3 drugs for over 10 years. Who knew I was being treated for fibro, but I didn't know that. Ha ha. Oh that pain in your groin could be what is called valvodynia. That is one symptom of fibro. Google fibromyalgia if you haven't yet and read all the symptoms. How is your house? Found out a lot of us fibromites have messy houses. Just not enough energy to clean. Motivation thingy turned off in the brain from fibro. I kid you not. Be well.
You can contact me privately if you want to talk or want more information.
BBWVixen I am your friend if you need someone to commiserate with.
Karen in Northern California
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Karen
