Discussions By Condition: I cannot get a diagnosis.

SEVERE Pain body wide, Shuffling, memory loss, stammering

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: Anonymous
  • February 7, 2010
  • 08:33 PM

My father has been dealing with body wide pain, on a massive scale for the last 2 years now, and it's only become worse and worse. No one has been able to give him any kind of diagnosis other then Fibromyalgia, and Parkinson's. The Parkinson's is possible, but the Fibromyalgia isn't likely. His symptoms don't match other patients with the same condition. It's said that patients suffering from Fibromyalgia have good days and bad days. And my father has only Bad days, and WORSE DAYS. Exercise loosens his muscles and allows him to walk easier (after waking up) but too much will cause him to be in INCREDIBLE PAIN the next day, or later that evening.
He's been on heavy pain killers for the last 2 years with ever increasing dosages.
Amazingly, even though his condition is worse then that of your average Fibromyalgia patient, he's still working a full time job and helping around the house on the weekends. Though I encourage him to rest as much as possible and allow me to do the housework whenever possible.
I'm so worried at this point, as we have been completely unable to get any REAL diagnosis, as they've been doing tests and so on for the last 2 years, as he sees every specialist they can relate to his condition. But with the state of our medical system, every visit, every specialist seems to take between 3 weeks and 4 months to be able to go see. And all the while, in the meantime, he's suffering from pain and agony I wouldn't wish on my WORST enemy's!!!!!!!!!

I'd appreciate any assistance or idea's anyone might want to share with me. WITH THE EXCEPTION OF HOME REMEDIES, ACUPUNCTURE, CHI REALIGNMENT, RAKI, AND ANY OTHER HOMEOPATHIC MEDICINE I'VE SEEN SUGGESTED IN OTHER THREADS. HE DOESN'T BELIEVE IN ANY OF THAT, AND NEITHER DO I. I am a man of science, and he a man of science and faith. I'm asking for legitimate medical conditions as answers here.
THANK YOU!!!!!

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2 Replies:

  • take a look into Polymyositis----Polymyositis is a disease of muscle featuring inflammation of the muscle fibers. and can cause much pain all over the boddy and nothing seems to help.and the doctors do overlook it. http://www.medicinenet.com/polymyositis/article.htm
    charmaine petzer 176 Replies
    • February 8, 2010
    • 01:28 PM
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  • I sympathize, and I hope you find the problem and get your father the Dx and help he needs. Don't give up and keep seeking new specialists everywhere you can. Eventually, you'll find the answer.Having said that, I don't think you should be so quick to dismiss the Fibro Dx. In fact, as you say you are looking for a "real" Dx, this implies that you don't think of Fibro as "real", which is a little offensive. Remember, before MRI imaging MS was disbelieved by many - including in the medical field - and since it was also more common in women, many patients were told it was "all in their heads". Don't judge what you have not experienced.Speaking as a Fibro patient, yes, some days can be said to be "good" and some "bad. The distiction is that what I call "good" is what most normal people call "bad", and bad for me would have most people moaning in bed, or on the floor where they fell.Get a look at the fMRI scans of Fibro patients in double-blind studies. Possibly due to higher levels of substance P in the spine and brain, people with Fibro experience levels of pain that have not been seen in any other chronic pain syndrome or disease, even with basic stimuli.Also look at studies of painkiller use for chronic pain - being on them long term can actually increase the level of pain the patient feels as the pain-killer wears off. I speak from bitter experience here. It's a vicious circle because you need the pain meds to even function, yet even if you do not have an addiction it will increase the amount of pain you feel with long-term use. There's been no good solution to this problem, though my pain-specialist has suggested several alternative pain management options (including acupuncture, which while it didn't work for me, does help a lot of people and has some studies backing it up). The one that works best for my muscle and joint pain is a soak in a hot bath or a hot tub. The latter works the best.Anyway, I don't have another solution for you - there are too many possibilities and I'm no specialist. Being a scientist, I do sympathize with your frustration, particularly at suggested Diagnoses and treatments that you don't feel hold merit. However, I would caution you to learn more about them and possibly try them before knocking them. Sometimes they do work, and many are undergoing studies now for the simple reason that while they do not work across the board, they do work (for some currently not-understood reason) for many, many people, where medications don't.And don't arbitrarily discard a Dx just because you don't understand it or dislike it for some reason. Yes, perhaps his symptoms are worse than the "average" person with Fibro. That doesn't mean he doesn't have it, his case could possibly be acute and not "average". In every disease and syndrome there are low-grade patients, average patients and acute patients. Before you make any assumptions, even low-grade exercise has me in incredible pain and muscle spasms hours later, and they will last for days - even up to a week - when it's something more heavy such as shoveling snow. And yes, there are days I can't get up without yelling because it hurts so much. Nights when even rolling over in bed is so painful it will wake me and I barely sleep. Much of this is from the Fibro, not my other Dx which is RA and often comes hand in hand with Fibro.The symptoms you list sound very like acute Fibro, though they could be other things too. I do hope that he does not have Fibro though, as Fibro has no cure and even the treatment as of now is a poor "management" of the symptoms.You have not said what specialists he's seen. If he's not seen one yet, having him go to a very good Rheumatologist. This could be something Auto-Immune, and many auto-immune syndromes have very similar symptoms to Fibro. RA, Crones and Lupus being 3. They are also often difficult to diagnose, as they do not always conform to the tests that are commonly run - for instance my Grandmother died of Lupus after decades of suffering. They only finally figured out what it was post-mortem.Also check out Lyme Disease. Sometimes it can take up to 6 tests to find it, and again it fits with Rheumatic Syndrome Illnesses and Fibro. Forms of the chicken-pox virus can infect different tissues even after someone has had it once, as well, and they also often include extreme muscle and joint pain, often without a fever.Off-topic, it's not uncommon for those with chronic pain to push through work and do their best to remain as mobile and "normal" as possible. In fact, many people with chronic pain will miss a new symptom and not go to doctors, partially because they often get dismissed as it just being a part of their known illness. I have had aggressive RA as well as acute Fibro for 7 years, since my late 20's. On top of the pain I take meds that make me sick once a week, and walk with a cane, yet I work over 40 hours a week with a long commute and do gentle exercise, garden, shovel the snow, general chores and I walk a lot. Many of my friends and family are surprised at my level of mobility and ability to push through to get things done. I know many other arthritis and Fibro patients who experience the same.The best of luck to you and your Father. I hope you find the answer.
    Anonymous 42789 Replies
    • February 8, 2010
    • 07:40 PM
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