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Fibromyalgia Community
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522415 tn?1242941355

Recently diagnosed with fibromyalgia and need help w/ how to deal with chronic pain, and where to go from here.

I just found this site, so I don't really know how this works or what all to write... But I was recently diagnosed with TMJ then shortly thereafter Fibromyalgia, like in early March. I've had symptoms for about 3-4 years, but the pain really came and stayed a few months back. They put me on Lyrica 75mg 2x daily and Tramadol 25mg, I have to be on Zofran for the nausea and Lasix for this swelling, and Ambien for the insomnia... I am on an anti-depressant and anti-anxiety med for panic disorder (had for a few years),  But I am very low right now, like really bad. Today I hurt from the tip of my head to the tip of my big toe, and felt tired and weak. I feel like crying right now. I do not know how I am suppose to get use to this. And now my legs, OMG they hurt, even when all the other pain sorta lets up, is restless leg common with this? My vision keeps messing with me, somedays I have perfect vision and then some days I have to wear glasses that I got prescribed about 6 months ago. Is this something that goes with it? I stay constipated, tired and just you name it. Should I also see a pain management doc along with the internal medicine doc who found this? Is there something out there to relieve this pain? Does anyone run fever also with it? I have bouts of 99 to 100. My internal doc wants a more conclusive Lupus test done and wants me to go see a Neuro doc for testing for MS and whatever else. This is so much on my plate. And I have a not so sympathetic husband. What do I do? Where do I go from here? Should I tell my doc I am still having pain that is preeettty bad!? I don't want to look like a pill popper or someone out to get dugs. (Truth be known most pain meds make me nauseated.) Anyone on Lyrica? How's that do for you? At first it was like great, really, alot of my pain went away, then slowly it has come back full force and with a vengence! I hate whinning to my family and friends, I need some support. Anything you can share or give advice for, is soooo appreciated. I am lost here and very sad. Thanks in advance and have a good evening.
5 Responses
Avatar universal
"Does anyone run fever also with it? I have bouts of 99 to 100. My internal doc wants a more conclusive Lupus test done and wants me to go see a Neuro doc for testing for MS and whatever else."

Fevers aren't common in fibromyalgia, but sometimes can be common in CFS (usually lower than 100 degrees). I think your internal doc is right and you need more testing to rule out other possible conditions.  Perhaps you will be diagnosed with a condition that is easier to treat and feel better.

Wishing you the best,

PlateletGal
387767 tn?1345875627
Hi Jen,

I'm sorry you're having such a bad time.  I was recently diagnosed also, but so far, my case is not severe.  I have pain in muscles and joints, but not all the time, and not extreme, except for the jaw pain which gets very sharp at times.  Also, my knees are bad.  I take an anti-inflammatory and something called Limbrel for my osteoarthritis in my knees.  I had carpal tunnel surgery on my right wrist, that was hard.  It still hurts.  

I am much older than you but I can relate to the unsympathetic husband.  It is very difficult when the one person you want to turn to when you are suffering appears to not care.  I know how this is!  Just remember there are people who DO care, even if we are strangers.  This disease is the type that people THINK you are FINE because it doesn't show on the outside, but you're not, obviously.  It's frustrating.

A few things--has anyone checked your thyroid?  If it's underactive that can cause constipation, fatigue and muscle aches.  Also the pain meds can be the reason.  Try taking a stool softener and eat more fruits and veggies.  That helps me a lot.

Be honest with the doctor and tell him everything.  That's all you can do and if he doesn't help you, try another.  I had to go to 4 doctors before I found one willing to even listen to me and not just dismiss me as *anxious.*
470168 tn?1237474845
Have a look at the website www. tacklingfibro .co .uk
I've put the spaces in so that it prints the website.
I had Fibromyalgia for 25 years before I was diagnosed about 4 months ago.  For the first couple of years I was convinced I had cancer and was going to die.  When I didn't I just had to live with all my stange symptoms that never seemed to 'show up' on any test I was given.
I have found diet the most effective thing so far.  It has lessened the pain, completely removed the tiredness and brain fog.  I also have some food intolerances, that I knew I had previously but hadn't really done anything about them eg. gluten and casein.  I don't know if Norah does email correspondence with patients out of the UK.  I suspect she does.  It is not a hard or weird diet to follow.  You simply have to remove some things (which are mostly unhealthy junk food), eat a nutricious snack every 2 hours and, depending on your symptoms she will recommend nutricianal supplements.  As she is also a physiotherapist she can advise on exercises to help.  For example I also had eye pain and problem with night vision.  This is much better now.
I know it can be hard to stay positive.  But I would recommend contacting her.  We had a group meeting last year and the president of the UK Fibromyalgia group came along and told us she was now symptom free!  But this is a diet that you will have to stick to for life.  As your health improves you maybe able to slacken it a bit.
Avatar universal
I was just diagnosed with Fibromyalgia. One of my symtoms is terrible stinging pins and needles all over my body along with bone pain. Sometimes I'll the the pins and needles without the bone pain. Eventhough my entire body hurts of that, it's mostly in both my hands. My doc says this has nothing to do with the Fibromyalgia and when I look on the web, it doesn't state that as one of the symtoms.

Has anyone experienced what I am?
Avatar universal
Hi Lori,
I have had fibro for the past 24 years, but have just been properly diagnosed in January. I was told I had Lupus, then it was hepatitis, then it was rheumatoid arthritis, then it was just arthritis. I got so sick of seeing doctors until this last bout which started in Ocotober 2007 & has not let up since. I have been put off of work as of February 2008. I worked in a office for the past 18 years. What I am getting at is that my hands are also terrible, I think most of the pain in my hands is because of all the typing, writing, & calculating pages & pages of numbers. Now I have a hard time peeling potatoes for supper & there is only my husband & myself. When I try to vacumn my hands throb, sometimes it even feels like the bones are breaking in my hands when I try to hold on to something. Everyones symptoms can be so different with this disease. Before this year my symptoms only lasted for about 3 months and then would disappear, but it has now been 9 months & I still have them. So if you are working at a job where you are using your hands alot I suggest you ask your doc to put you off of work. Because they only get worse not better. You have to take care of yourself as nobody else will.
Keep in touch,
luckydzack1
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