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Upset and Frustrated need advice I believe I have Fibro.

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Posted 9/16/2012 5:02 AM (GMT 0)
Hello Everyone!
I am new to the forum I stumbled on this site while doing some searching on Fibromyalgia. I have been suffering from chronic neck and back pain for 2 years now and I have been seeing my doctor evey month for my pain. I first started seeing my family doctor for chronic headaches that were horrible. My pain was at this point all in my neck and lower back. My neck pain was very intense it felt like someone was sitting on my head all the time and yanking down on my shoulders. I know my head aches were steming from the neck pain. My doctor wrote if off as stress and insomnia. I stayed on him about it and finally got him to get me an MRI after going through months of pain xrays nerve test and PT. The results came back 2 discs are pressing on the spinal cord along with narrowing and bone spurs. At this point I am like ok I now know alittle of what is going on. I had a lumbar MRI which pretty much said the same things also. I still could not figure out why I had all these other issues that all seemed linked together. Insomnia, stiffness so bad in the morning when I wake up I can barely move. Random hives all the time, hair loss, weakness in hands,headaches,sore throat which I always mention when I go had a bunch of test can not find a reason,could not concentrate(I went to another doctor who said I have ADHD thought that was odd hearing that for the first time and I am 30),Anxiety, bad pains in my knees,rib cage and ankles for no reason,sleepy all the time no energy, thought that was due to my insomnia so I wrote that off, feeling like I have the flu for a couple days but never getting sick, bad pelvic pain, night sweats,numb hands,bad muscle cramps at night every night,heart palpations. I have told my doctor about all these symptoms every time I go and have had a bunch of labs and physicals and nothing really abnormal every came back. I have been put on every med to try to help my symptoms but the only one I am currently on is pain meds because all the nerve meds and sleeping aids did not work well with me only made some of my other issues worst. I told a nurse about my health concerns and told her the doctor never came up with an answer to what could or is wrong. My doctor never even considered I may have Fibromyalgia. My friend the nurse said to me it sounds and I am not a doctor so talk to yours but it sounds like you may have Fibromyalgia. I had no clue what is was and looked online and filled out a quiz to see my risk factors and got 14 out of 14 questions pointing to it being possible. I went to my doctor two days ago and let him know about the quiz and what he thought. My doctor did the tender points all all but my arm area was tender if not painful to press on. He just kinda went through his usual well you have tried all the meds currently out there to treat FM at this point and none worked so keep up with your pain meds and I will see you in 4 weeks. I never got an answer if he thought I had it or if I should be reffered to another doctor. I am upset because I don't know what my next course of action should be. Any advice on how I should call or what I can do? I don't know anyone with FM that could tell me yes I have the same symptoms and it sounds like you have it. I am frustrated because I am only 30 and use to be so active and full of life and energetic and now I am in pain all the time and people around me make me feel like I am making this all up in my head and creating all these symptoms. I always knew there was a connection between all of them and held out hope that I would at least find out why and then would try to treat them as a whole. Thanks for anyone who reads this long post sorry it was so long I did not want to leave anything out! Lol. Any advice or insite would be greatful. Thanks so much.
Posted 9/16/2012 7:34 AM (GMT 0)
I am surprised Dr. did not refer you to a Rheumatologist to check for Fibro look-alikes or to a neurologist or osteopath regarding your neck issues. He is following protocol hoping your body self heals from spinal issues and trying pain meds. Did he give you Lyrica or Cymbalta? My doc did same thing leaving me hanging for months, then two operations on back which triggered fibro when failed back surgeries with scar tissue in spine left me nearly bedridden for the last two years. At least they tell me its fibro on top of the spinal issues. Osteopath wants to do "exploratory" surgery. I said no to that with the way I scar and fibro, I will go with Pain Specialist recommendation for neurostimulator and live with it. Your symptoms sound like fibro, but could just be a result of your pain keeping you tight and not sleeping. If your insurance will let you go to a specialist without his referral, go to the docs I mentioned above and get the ball rolling. It usually takes a month or two to get into a specialist anyway and demand your primary care doc to be more proactive. The last thing you need is permanent nerve damage while he putters around.
Get going and good luck!
Posted 9/16/2012 8:08 AM (GMT 0)
Hello and Welcome to the Forum!

You say the Doc did the 'pressure point' exam and you had only one point that was not tender? Then you have Fibro. I highly recommend reading more here to see how others suffer and find relief. A quick note about the ADHD - it can afflict anyone of any age and is frequently goes misdiagnosed for years, mainly because it wasn't recognized as it is today.

You have a host of symptoms, many of which can be attributed, directly or indirectly, to Fibromyalgia. The list of potential relief solutions is just as long. Personally, I have been taking Percocet for my Fibro since 2008 - at it's worst, I take up to 5 per day but that's only during my long 6 day stretch of work - 12 hour shifts - and I purposely wean off within the first 2 days of finishing work.

However, during flare periods (whether from over-extending, lack of sleep, bad weather, cold, bad posture) I often need to maintain a 2-4 dose level in my system. As Percocet is a narcotic, I push myself to have at least one full week per month Perc-free. I manage this by using alternate methods - hot shower/bath, sitting in the sun, a leisurely walk, soft, warm clothing, warm drinks, whatever I consider 'comfort food" and alternative herbal pain remedies.

Don't get feeling down about this - you CAN lead the same life you always have, you just need to get the pain under control and discover what I like to call your "triggers" and "safeties" are. Triggers being what causes the pain and Safeties being what controls or lessens the pain.

There are many activities that I could decide cause too much pain to continue with but I refuse to let this rule my life. If I want to partake in an activity (say, camping or canoeing) that I know will leave me in pain then I plan for it. I'll eat a bit better and do some light exercise and give myself a mental 'heads-up' that pain will follow. I just accept that some things, for me, require a sacrifice of pain.

Some may not agree with this approach but I'll be 'dog-nobbed and dag-nabbed' if I'll give up what makes me happy! about 20 years ago, I had Orthroscopic surgery on both knees and the Doc said I'd never ski again - something I started when I was 5. I spent over 14 months in Physio and the Doc said the same thing.

That winter I skied the Rockies in British Columbia with my siblings. I wasn't as strong as I had been and needed more rest than ever before but feeling the wind and snow in my face again was glorious. We skied for 4 days and I had to hit the sauna and whirlpool for a couple of hours each day just to be able to walk but I wouldn't trade a minute of it for a pain-free month!

I hope your Doc can get 'in tune' with the truths of Fibromyalgia and offer you more help but I strongly suggest you research it at length for yourself as has not yet gained wide recognition as a true 'disorder' by Physicians. I have seen Docs who barely know what it is, others who denounce it as a psychological manifestation of some other underlying physiological and yet others who know all about it, recognize it's effects and idiosyncrasies and are quite prepared to treat it.

Torttone, I hope some of this wildly meandering and verbose response is of help to you. Just know that this is the place to find others who suffer as you do and who are ALWAYS willing to listen and respond. Please keep coming back and sharing - we all benefit from each others' input - you never know how much the most incongruous of comments can help another.

Take Care and Ease

Brian
Posted 9/16/2012 8:22 AM (GMT 0)
Torttone,

follow this link for the Fibro 101 thread - https://www.healingwell.com/community/default.aspx?f=24&m=1565084 - you'll find a wealth if info, including a list of possible symptoms.

B
Posted 9/16/2012 8:22 AM (GMT 0)
Welcome tortitone- your story has some similiar history as mine. I had suffered with my disc in my neck compressing on the spinal cord. I was having severe pain mostly in my arms. I had been diagnoses with fibro before my neck injury. I had a 3 level cervical fusion. It had to be done and it solved the severe pain in the arms. The surgery was long rehab. Fibro pain still there.

I would recommend you see a rheumatologist and a neurosurgeon.
Your symptoms sound like fibro, but the Dr. needs to diagnose you. I was wondering if you had the nerve conduction test yet? This would tell you if the surgeon needs to do surgery or try other options. You wouldn't want nerve damage done from those discs. This is why I had surgery. I had spinal cord compression.

Remember fibro can have similiar symptoms of other diagnoses. This is why a rheumatologist orders lots of blood work, to rule out things like lupus, ms and etc.

If you get diagnosed with fibro, it can be manage. The biggest problem most of us have is pain and fatigue. Stress will set this off real quick. After my neck surgery and several years later I found this site. It gave me hope and I wasn't crazy feeling all this pain 24/7. I finally learned how to manage my fibro fairly well.

I hope you can see the right Dr's and get a proper diagnoses. I hope you continue to let us know how things are going. Feel free to ask questions. Great place for support.
Posted 9/17/2012 7:09 PM (GMT 0)
Thank you guys so much for the info and warm welcome. I will give you all a little background on everything that is going on and what all I have tried and what test I have had done. I First started off telling my doctor about my severe neck pain and throbbing headaches and my lower back pain that shot through my hip into my leg. I thought all my pain in my hip was caused from a car accident I was in back in 2007 I dislocated my hip and severed the main nerve that runs down my left leg. I had no feeling in my leg from the knee down. I had drop foot and nerve pain that you would not believe. I was told I would never be able to walk without the help of foot aides and a cane or walking device because after 6 months there was no improvement.

I did not settle for that and did intense PT and now still cannot move a few toes but I no longer use any aides and besides not being able to wear flip flops are heels ever again you would never be able to tell. With my back pain I don't care to wear them anyway LOL.

My doctor told me the pain was not coming from my hip it was really coming from my back and GE ordered X-rays first. He also told me to loose weight. Which kind of made me mad because granted I could have lost 15 to 20 lbs but he made it seem like that was the cause of all my problems. I am 6' 190 lbs I have had 6 children. I had neck and back pain when I was 150 lbs.

I got my xrays back and nothing showed on my lumbar which I was told does not pick up much unless it was bone related. It did however show Degenerative Discs in my cervical spine. The doctor then ordered nerve conduction studies in both upper and lower areas. The results did not show any pinched nerves so I was kinda S.O.L in his eyes it seemed. That was all he seemed to be concerned about. I finally after begging him practically to give me an MRI or my lower back because my hip and leg were getting worst and my leg kept giving out on me. I actually on My birthday a year ago came back from dinner and my leg gave out and I tripped and broke the 5th metatarsal bone in my foot. I then got the MRI.

The results showed narrowing in 3 spots ,2 slightly bulged discs,and bone spurs but no pinched nerves which my doctor always has to mention. The doctor then referred my to a pain management doctor. At this point every time I seen him I would mention all my other symptoms which include horrible headaches,flu like symptoms all the time,hives,insomnia,heart palpations,muscle stiffness the worst being in the morning,burning in my upper back around my shoulders,my jaw always hurt because I clinch my teeth all the time,muscle spasms which wake me up every night,night sweats,pains in my joints,my feet turn blue and are always freezing along with my hands,my hair falls out a lot bad anxiety,lack of concentration,and I am sure there is a bunch more.

My doctor ordered a bunch of blood work from vitamin deficiency,thyroid,hiv,arthritis,and Lupus. Nothing abnormal came back. I thought I might have Lupus because my 7 year old daughter got diagnosised with Lupus last year and we did not know anyone in our family who ever had it that we know of. My doctor said I did not come back with whatever test he ran saying I may have Lupus. At this point as far as medications go I have been put on Lyrica and I got bad tremors and made my headaches worst and I could not sleep more then ever and bad dry mouth which I always have a sore throat so I could not take it any longer. I then tried gabapentin pretty much the same results with increased anxiety and made me feel off centered. I tried every anti inflammatory Med out there which did nothing but upset my stomach. Then my doctor finally gave me pain meds which I am on 15mg oxycodone 3 times a day. I was on 4 times a day but out of no where he cut it down to 3 saying it was too much medicine. I have been on anitripiline(sorry don't know the correct spelling) that just made me feel weird and not myself. I tried for sleeping lunesta did not like it made me feel extremely sleepy for the rest of the day,ambien which never worked made me itch for 3 hours before I finally feel asleep on my own,hydroxcine maded me feel groggy for the rest of the day,doxcipin made me really depressed,lexapro for anxiety and sleep made me feel like a zombie,Adderrall because the one doctor diagnosed me with adhd which I am thinking is now the Brain fog associated with Fibro,Daiazapam for anxiety and a muscle relaxer but I no longer take because I can't function on it and I have little kids. Zanaflex did nothing short of dry my mouth out so bad I couldn't breath,flexeral same thing but also made me feel like I could not breath when I was lying down.


I have tried so many meds I am willing to try anything safe to get my symptoms under control and find something that works. I finally went to a pain management doctor who said I did have a pinched nerve in my back and probably the neck sometimes the MRI does not pick up on it unless you get one with contrast. They ordered an MRI of the cervical spine and then found the issues there. I went to them for 6 months and tried everything then threw at me but stopped physical therapy because I was going there 4 times a week for 6 months and had no improvement and it aggregated my symptoms. The pain management doctors did not like that and said they would not give me any more pain meds if I did not continue with PT. I thought that was ridiculous because I completed everything they asked and told them it was not helping only making me more sore and I tried it for 6 months. I am a good sport but if I am sticking with something for 6 months when it is causing me pain I have to draw the line somewhere.


So back to my regular MD and he has not seemed like he is very interested in what's going on. I do have a follow up ultrasound to have my thyroid checked out because when I got the MRI of my cervical spine done they seen some nodules on my thyroid that I should have checked out. I am having them looked at again to see if they changed or got any bigger. I had to remind my doctor that it has been 6 months and he acted like he had no clue what I was talking about.

At this point I know my regular doctor can only do so much and I probably should get a new doctor because he is so busy has a million patients and runs a family practice and its only him. I just have been seeing him so long I hate to pick up and move to a new doctor that knows nothing about me and I have to start from square one. My doctor seems like he labors me as I am only 30 there's no reason I should have all these issues I am too young he says that. You are too young to feel this way. I would like to know how I go about seeing a specialist. Can I ask my doctor for a referral and then find one in my network? I seen a neurosurgeon before and I waited 3 hours just to see him for 5 minutes and he said your too young to have a surgery that your neck would require and put me on a steroid for inflammation. Ughhh. I am just really frustrated and want answers and would like to live a descent life where I can deal with this God awful pain and be able to not dread taking my kids to the park or going to the beach. I always stay on the sidelines while everyone has fun because I know I will be in lots of pain if I join in. Thanks guys for listening to my novel! LOL I wanted everyone to get the whole picture of what was and has been going on. Thanks for reading.
Posted 9/19/2012 6:09 AM (GMT 0)
Tortitone thank you for feeling in the gaps for us. I now have a better understanding. I am a retired nurse, so I thought we were missings some facts. Lol I guess you can't keep the nurse out of me.

For many years I went to Dr. After Dr. Test after test. Some things they would find abnormal and others normal. I spent so much time in the hospital with over millions of dollars in bills. I had never ending pain it seem. I was never told that almost all my diagnoses were fibro related. All I knew that I had zillions of symptoms. Not one Dr. Told me that they were fibro related. Each Dr. Would treat the symptom. I was always wondering why me so young for my health to be so poor.

I have to tell you that I was at my end of the rope with my health. I just happen to be surfing the net and found this forum. I began to read and realized that all my zillions of medical problems were almost all fibro related. I was mad at first because my Dr's never shared this with me. I knew I had fibro diagnoses, but I didn't know it caused all the extra symptoms. It all made sense to me as I read daily on the post. All I could say is WOW !

I was able to get ideas on how to manage my fibro here. After many months down the road my health turned around for the best.
I rarely have test done anymore. I now know why I have all these symptoms. It's called Fibromalgia.

Post Edited (ak angel) : 9/19/2012 12:12:27 AM (GMT-6)

Posted 9/20/2012 10:59 PM (GMT 0)
See my posts to jennahill (DO I REALLY HAVE FIBROMYALGIA?). Read MPKB.org. DONT supplement vitamin D - you'll find out why at Curemyth1.org
Regards Gus.
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