I don't normally use my blog as a place to vent problems that I face in my life. I like to keep it as light and cheery as I can. But lately I've been struggling and I figured I should reach out and see if anyone has any advice. Chronic Pain has been plaguing me for the past 2-3 years. Before that I was achy for another 7-8 years, but not enough to slow me down. I had originally chalked it up to the abuse my body had taken during my 20 years as a gymnast. However, as the pain worsened, I eventually had to seek out medical advice.
After coming to the realization that I needed help, I spent the next two years feeling like a guinea pig. Have any of you out there heard of the Fox TV show,
House, M.D? It is about a brilliant doctor with horrid bedside manners. Despite being brilliant, Dr. House can never identify the patient's problem right away. He spends the entire episode trying out different methods of treatments. If treatment A works, then the patient have one disease. If treatment B works, then the patients has this disease. If one of the treatments doesn't work, then the patient gets sicker because the disease they do have doesn't like the treatment plan.
So basically that has been my life. I presented with symptoms related to Lupus. Everything was there except the blood work came back negative. My doctors inform me that it a progressive disease and that it is possible that I have Lupus, but it won't show up on the blood work until I'm in my late 50's. So I won't be treated for Lupus, but will be monitored and retested each year. Then they suspected that perhaps it wasn't Lupus, but Rheumatoid Arthritis because of all the swollen painful joints. Again, the scans and blood work came back negative. It went on like this for months and months.
Finally, the doctors gave up and said that since they can't figure it out, it must be Fibromyalgia. There is no test for FM only specific points on the body called tender points. FM brings widespread pain and is related to malfunctions of the nervous system. There are very few treatment options for FM and the side effects of the meds are just as painful as the symptoms. The more I research FM, the more I doubt the diagnosis. But since I don't have a medical degree, I am at a loss.
All I do know is that I have come full circle in life. At the age of 3, I needed help climbing the stairs. It was just too difficult to make it all the way up on my own. At the age of 13, I could flip across the balance beam, skinnier than a single stair, effortlessly. At the age of 23, flips on small pieces of wood were a thing of the pass. But thankfully, the stairs were never given a second thought. Now at the age of 33, I need help climbing the stairs. It IS too difficult to make it all the way up on my own.
Do you have Chronic pain? Do you have FM? What advice do you have? How do you manage the pain and continue living life to the fullest?
11 comments:
I was diagnosed officially 10 years ago.Apart from whatever medications your dr is willing to give (they only Take an edge off if your lucky) mine has become a life of restricting activities and taking naps with plenty of warm showers and heat pads thrown in.Ive had to adjust my life to the fibro not the other way round.Im slower and much less active and any activities have to be scheduled with a recovery period afterwards.
Oh girl... my heart aches for you. I am a year older than you and was diagnosed with Undifferentiated Connective Tissue Disease and Fibromyalgia the August before last and officially diagnosed with Lupus last Summer. My ANA titers were really high, so it was a little more simple to diagnose than yours. Feel free to email me with any questions! I will be praying for you!
Take care,
Trish
Have you been tested for Lyme disease? My dad was just diagnosed last week after years of misdiagnoses and chronic pain. He has also suffered neurological damage and has difficulty with fine motor skills. We're praying that treatment will work, but we're mostly relieved that he finally has a diagnosis.
Well it looks like a lot of us are in the same boat! I too was first thought to have lupus but I was told age didn't matter it was they can do 10 test and it does not show up, my test was a positive/negative which means there is some in the blood but not enough to be diagnosed. After 15 years of pain and infections they said Fibromyalgia no way that is not what it is!! Now they say cushings and insulin resistance, wow a lot of different diseases hey? I do take pain meds but try not to and they do not help that much at a low dose, so I do not live a normal life but grin and bare it! Also my friend was diagnosed with FM, then she happened to break her leg and at the ER a resident said I do not like something going on with you, yes a rookie said this, turned out she had heart failure not FM, that's what they tell you when they cannot give a diagnosis!
Oh, your story is my story. I woke up one morning when I was 22 and couldn't open or close my hands without incredible pain. Then it spread to my knees, hips, toes...
I went through every available medication, even the ones that required a blood test every week to make sure they weren't shutting down my liver.
I went off the medications completely when I wanted to have my kids and haven't been back on them since. I take a lot of advil and tylenol, and do a lot of resting. I'm a work at home doll artist, so I'm able to work around the bad days. I was diagnosed back then with rheumatoid arthritis, and now they are leaning more toward lupus, not that it really matters what they call it.
I feel your pain, and your frustration. I'm 36 and there's days that all I can handle is getting my girls out the door and onto the school bus.
Wow, your post really hit home as I, too, have been diagnosed with fibromyalgia, am about to turn 33, went through two years of being poked, prodded, and treated like a guinea pig, also have all the symptoms of lupus except the positive blood test, and suspected of having R.A. except no positive blood test. I have tried special diets, supplements, and meds with little relief. So far, the combo of Lyrica and Cymbalta provides the most help. Just know that many people won't understand - you don't look sick - but there are others who know exactly how you feel. Hang in there.
I'm so sorry you are in pain! It really sucks, doesn't it?
I suffer from a few ridiculous illnesses that have caused me to be in chronic pain for the last 10 years. I have been diagnosed with Fibromyalgia, Psoriatic Arthritis (which is more rare than but on par or worse than Rheumatoid Arthritis) and I have Burning Mouth Syndrome.
I am on copius amounts of Gabapentin daily...I take 3000 mgs a day. Gabapenten itself is not a painkiller per say, but it does work for some odd syndromes etc. I'm still in alot of pain though. My rheumatologist wants to put me on methotrexate but my MD told me that its basically a chemo drug and I'm not sure I want to put my body through that.
I hope you get some relief soon!
Anne
i hear ya. i started having horrible, unexplained back pain in high school. It quickly spread. I was officially "diagnosed" (aka " we don't know what else it is") when I was 17. I had pills pushed at me for a couple years and so I gave up. Through college, and some years after college it got much, much worse. I let it go too far. And I let myself get out of shape. So finally, my now fiance pushed me to just go see a doctor again. More pills pushed, but I pushed back. I'm convinced it's some sort of out of balance 'thing' that all doctors are missing.
I'm on medicine for anxiety; it doesnt help much. I'm starting appointments to try biofeedback for the anxiety/fibro fog/ AND pain management. I met with the psychologist who does it and she's AMAZING. Finally, I feel like this is someone who is going to help me get ahold of this thing!! She suggested SUBLINGUAL melatonin for sleep, since 1) POOR sleep is such a widespread problem in fibro + your body needs sleep to repair muscle tears, and your day to day things. No sleep = pain ... and 2) She said most melatonin PILLS that you swallow don't do much good. Most of the pill is destroyed by your stomach and very little of the melatonin makes it to your bloodstream. She suggested sublingual because it goes straight to your bloodstream. She also suggests it because no sleep aid/muscle relaxant I've ever used to sleep has helped. PLUS I prefer to go a more natural route. We haven't had kids yet, and when we DO, I dont want to have to go off of several medications.
This same doc also recommended taking vitamin D3 (2000 IU/day) and Magnesium (250mg 2x a day). I had read both of those suggestions before on fibro forums so I knew she wasn't full of crap. I had my vitamin d3 levels checked and I was definitely on the low side. My number was in the 30's, and it SHOULD be in the 50-60's range. She advised most people that live in climates like the midwest, or any place that doesn't have yearround sun, are vitamin d3 deficient.
As far as the magnesium goes, it is a natural nerve/ muscle relaxer. She said it will help with mental calmness as well as physical. I had been hesitant to try magnesium before because I read that people often get diarhhea when taking it. She said this is because people take BOTH doses at ONE time, and it relaxes the muscles it's not supposed to relax... and that's why people have loose stool. If you take 1 pill 2x a day, it works better.
Anyway- I've tried every medication under the sun. Meds for nerves, muscles, and joints. None have worked. I'm on Lyrica now and it's SOMEWHAT working (150mg 2x a day) but I've been eating ravenously... and I'm not normally like that. Funny thing with Lyrica... is that it causes weight gain. In trials, 16% of subjects tested reported significant weight gain. Super! So I'm not sure it will be something I stay on, but it HAS taken away the burning muscles and some of the muscle aches. Nothing for my joints though. My pain specialist pushed another pill at me today for those. UGH
I was also recently referred to a physical therapist to learn exercises to strengthen my back/core. Exercising (oddly enough, painfully enough) is one of the best treatments for fibro. Low impact exercise of course; gentle yoga, walking, aerobic exercises, swimming. All this recent activity to fight my "fibro" came about because I got a new primary physician. She decided she wanted to form a "team" of doctors to figure this out for me.
Interestingly enough, my dad had chronic fatigue syndrome years ago, and still currently has chronic pain. I'm convinced there's some type of genetic link. Don't be afraid to "dump" your doctor and try new ones if yours isn't doing what you want. Get everything under the sun tested! I was hoping mine was a thyroid problem because the symptoms are so similar... but no such luck. Nothing "treatable"! Good luck! And feel free to email me if you'd like! (dealbunny20@gmail.com)
Try acupuncture...
It worked for my mom...
Kel, hi! I ran across your post in my e-mail box tonight, I guess that I had saved it, intending to respond back at some point. I was diagnosed with fibromyalgia last year. I've been going to a rheumatologist since '10, and she had initially diagnosed me with chronic fatigue syndrome, and sleep problems. Ended up with two sleep studies and a CPAP machine. I've since been diagnosed with fibromyalgia. I "failed" gabapentin and Lyrica---the lyrica. I've got IBS, migraines, restless leg syndrome, insomnia, right occipital nerve headaches. Cymbalta , Mirapex, and Lunesta are part of my bedtime meds. Lortab, I take as needed.
A site that another blogger runs is called My Chronic Life, and I subscribe to her posts, getting inspiration from it.
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