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Fibro question

Dec 25, 2014 3:33 AM

I have a couple questions about fibromyalgia. As you may have seen from my other post I haven't truly been diagnosed with fibro but my primary doctor says that's something to keep in mind. So I wanted to talk to some of you that has been diagnosed and see if you all think I might have it too. So I wanted to share my symptoms, tests, and all that lovely stuff! Mirgraines, my biggest problem. I have pretty bad aches and pains usually in my neck shoulders and back. the very bottom of my back those two little bones above my butt ache so much sometimes I get lucky and they will pop which I know people say you shouldn't do but it helps. Ps sorry idk what they are called. Days that I'm feeling worse my elbows, knees, and ankles will hurt. Any time I am on my feet for a little bit I end up feeling like I've been ran over by a truck. Another symptom is nausea, not every day but I get nauseous pretty often. It's always random out of the blue. Also I get chest pains I don't have them too much but I'll get them from time to time. When u get one it will be a really sudden sharp pain almost like a stab, it makes it kind of hard to breathe then it just goes away. I've had that happen a few times where it has scared me pretty badly. I do have a heart problem and I've talked to my heart doctor about this. I told him it felt like the pain was in my heart but he said it sounds like it is in my chest and that it's nothing to worry about. Which I can't help sometimes when it feels like I've just gotten stabbed. I would also say that I have sleeping problems. I can never get a good nights sleep. I always wake and go back to sleep then this happens over and over again. Umm I'm trying to think something I've had or have going on with me that could be relevant, if I add something that's not relevant to this I apologize I'm just trying to see what you all think and if anyone has similar problems.. I was diagnosed with adhd when I was 7. I use to have a tic in my neck it wasn't really bad it was actually hardly noticeable but that eventually went away on its own. Another thing is my eyes. My vision changed dramatically! I use to be able to see for miles and now I can't read a sign 2 feet away from me. I never noticed this until someone said something to me but I blink a lot and if I pay attention to other people's eyes I realized how much I do! one day my grandmother (who is a nurse and is helping me through all this) told me something was wrong with my eyes then she figured out it was when I close my eyes my right eye closes slower than my left eye.

Now onto the fun doctor stuff! I have had a cat scan and mri of my head because of amount of mirgraines I have. They were both fine. I went to the chiropractor and when he took an X-ray he noticed a slight curve at the top of my spine up towards my neck. Then I had a mri of my neck because he thought maybe the problem was starting from there. Also fine. I have an tons of blood work of everything under the sun my doctor thought could be causing this. Everything turned out okay. It was kind of on the low side for b12 and iron but doc said it was fine and now I take vitamins for those 2. I've gone to 4 different neurologists, biofeedback, and the chiropractor. All of them were a waste of my time. All the neurologist did were put me on a new medicine and saw me every 6 months. The biofeedback was a joke I'm not sure if it was the lady I went to or what but I wasn't a fan. She was trying to tell me I could just think my pain away and take deep breaths and everything would be ok. The chiropractor was okay it never improved my migraines but it was nice to get my back and neck adjusted but it was pointless to go with 0 results.

My last thing!! I have this place on the top of my shoulder close to my neck and I'm assuming it is a cyst or something but I'm not positive. It is like the size of a little marble and it doesn't hurt unless I press on it. When I showed my grandmother she said she thought it could be a pressure point because some people with fibro have certain pressure points causing pain. Idk if it has anything to do with it but it's on the same side that my head always hurts when I get a mirgraine and that side of my neck hurts worse. Does any one else have something like that?

Please comment back and tell me your fibromyalgia symptoms and let me know if you have any questions or thoughts about mine! I wanted to add I'm only 19 so I can't say it's my age causing the pain. I should be living a healthy happy life!!!!!
Sorry for writing so much, but I hope you all can help!!! 😁

Dec 25, 2014 8:57 PM

Hi Ashlyn, I can't say if you have it or not. I can only say what I noticed of myself. I started hurting in 2009, waking with pain & stiffness all over. I also had unusual fatigue. In 2010 they found a large abdominal mass, adhered to various organs. It required extensive repair surgery, and I never returned to work, getting worse with fatigue & pain. After 2 years and multiple tests & examinations, my doctor diagnosed fibromyalgia. The longer I stand or walk the worse the pain in my back, buttocks and legs. Sometimes it even affects my upper body and arms.

Dec 25, 2014 11:44 PM

Fibro, from my own research on the Internet is equal pain on both sides of the body. My big thing and something you could research is rhumatoid arthritis? Hope you get some kind of answers.

Jan 03, 2015 2:38 AM

Hello, it's actually quite common to have fibro on just one side, or for it to be much more painful on one side.
Ashleynwright, so sorry you are suffering! Fibromyalgia is a catch-all term for a set of symptoms that can actually be caused by a lot of different illnesses, most of which have similar treatments so doctors don't always keep searching for the specific root cause as it is usually better for the patient to start trying pain management ASAP rather than spend potentially years trying to work out which specific illness is causing their fibromyalgia (then probably give them the same treatment anyway). It's worth ruling out the conditions that cause the set of symptoms we refer to as fibromyalgia, but have different treatments, like rheumatoid arthritis, MS, lupus, mould poisoning, aspartame poisoning and mercury poisoning.

Jan 03, 2015 4:02 AM

Yeah I know what you mean I have been trying to figure out what's wrong for about 7 years now. I have gradually gotten worse over time. Just more appointments, new docs, probably 100 different medications, and no new answers. I am still so young and have the rest of my life ahead of me and I don't want to be postponed anymore. I think I have been very affected by whatever I might have, mentally and physically.

Thanks for the reply I'll have to check those out!

Jan 04, 2015 4:04 AM

Ashleynwright you may find it comforting to see this short documentary (just a few minutes) about a young girl living with fibromyalgia. Sometimes it helps to see someone else going through the same thing. I'm the girl in the video - it was taken about 7/8 years ago for a friend's university film project and I used it to raise awareness while I was at university. I'm working now so have had to dial back my awareness efforts so that I can handle working but I am still contacted by people who tell me the video made them feel less alone, so I hope seeing it will help you.

Jan 04, 2015 2:48 PM

Great I'll watch it. What's it called?

Jan 04, 2015 3:42 PM

You didn't really describe your pain thoroughly. What's it like? It's really hard to tell whether you have fibro or not.

I was diagnosed with fibro and my pain 24/7, it's all types of pain; throbbing, stabbing, sharp, dull, cramping, sometimes it feels like an electric shock, other times it feels like burning or a really cold stiff cramp. I'm always exhausted and no amount of sleep helps. I have pain to the touch, everywhere on my body is tender. I do have a history of migraines but they're not as common anymore. I mainly get pain in my hands and when that happens, my veins swell up really big. I also have a marble sized ball on the right side of my neck but it doesn't hurt and its been there since I was 9 (I'm 20 now). I was in a car accident a year ago and that's when my fibro pain started, when I realized the pain from the accident never went away. Just like you, they've done multiple drug tests, I've seen a chiropractor, several physical therapists, (I did PT for 4 months and got no results, it's like I can't build muscle in my arms and back anymore), I've seen a neurologist, a spine specialist, as well as a concussion specialist because my memory was horrible after the accident and I had a photographic memory before. Recently, I've linked all my symptoms to fibro. You should try writing yours down and see what causes your pain. For me, i don't have to be doing anything in order for it to start, it never goes away. I have pain in my jaw and teeth as well. Do your joints swell? Mine didn't, but my mom has Rheumatoid Arthritis and for a while the doctors thought that's what I had until they did an inflammation test. Also, antiinflammatory drugs don't help my pain. The only thing that kind of helped prevent the pain was cymbalta..but it didn't really help my memory and it was very expensive, but it was prescribed to me by my neurologist before my rheumatologist diagnosed me with fibro.

Jan 04, 2015 3:44 PM

It might also be a good idea, if you aren't already, to see a psychologist, to just have someone to help you talk about things. Specifically, you can also request to be referred to a Neuropsychologist, a psychologist who specializes in chronic pain.

Jan 04, 2015 3:46 PM

Also, the nausea I get is horrible! Tell me if yor symptoms are similar to mine

Jan 04, 2015 4:37 PM

I plead fibrofog :)

Jan 05, 2015 12:40 AM

I was going to a neuropsychologist a little while ago and I had to drive out of state to see him (about 45 mins) and he was really nice but we never seemed to get any where. He would just give me differnt medicine of new medicines and then just said oh yeah toll get better but never really even tried to get to the root of the problem. I was honestly just wasting my time and money because he was not cheap! I've also been to 3 or 4 different psychologists and they say that I don't need to be there I'm not depressed I'm physically fine, every single one! I am lucky enough to have a very supportive family and boyfriend that I can talk to when I'm feeling down. Much better than going to pay to talk to a stranger lol

Jan 05, 2015 8:40 PM

Mila-you description of your changing pain feeling is sooooo right on! And it travels!

Jan 06, 2015 11:18 AM

I was 26when I was diagnosed with fibromyalgia. I have intense pain in right shoulder, shoulder blade area, lower back and my legs ache constantly they feel so heavy it hurts to walk and I walk really slowly now. My pain is everyday all day and i don't sleep well either. Tried all kinds of meds no relief exhausted all the time. Your Dr can easily check you for fibromyalgia by testing different points on your body for pain! Good luck

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