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You Suffer From Fibromyalgia?


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Guest Medicinal Patient

If you suffer from Fibromyalgia, you might want to check out this site - http://www.fmwellness.org/index.htm

 

Thanks so much for the link Ms Chocolate. It is suspected that I have Fibromyalgia but unable to seek testing or treatments with no insurance. I will save this link to participate when I have experience in treatments and strategies.

Can anyone share on the ways they were diagnosed? I don't want to be thrown into this category just because of a sibling and parent have fibromyalgia.

Even tho we all for the most part have the same symptoms I would like an independent diagnosis, whatever it may be.

It is my understanding that there is no definitive tests at this point? I have heard that bloodwork may help diagnose now but not certain. Is there certain tests I can ask my PCP to perform or would I have to go to a specialist in that field like a Rheumatologist? So far my Dr shows no interest in finding solutions to my intense burning pain, spasms, numbness, and overall tenderness everywhere that causes pain with the slightest touch. Knowing what my Dr knows she still says I am a young healthy Woman and there is no excuse that I am not working. Is there any type of Drs in Kent County that anyone has experience with or could recommend that is knowledgable with Fibromyalgia and willing to treat it properly? Thanks much for this post Ms Chocolate.

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sorry to say it, but you might need to travel to get a diagnosis. i have no idea where kent county is! i have a doc at troy beaumont who is probably the best in the state with fibro...Dr. Samson Kpadenou... he has approx 35 fibro patients in his practice, and all of them are on disability...he gives samples for meds til you can get free meds thru pfizer, etc...i filled out the forms in january, still waiting. the meds are EXPENSIVE. diagnosis can only be made by palpetation of trigger points along ur neck, spine, etc...sometimes when mine flares up even clothing touching my skin hurts. my heart muscles hurt too(costochonditis), which can really upset u physically and emotionally...my mother has fibro, and 2 of my daughters. i have learned quite a bit from just searching online. taking care of yourself is of utmost importance.

fibro is usually triggered by a stressful event or injury. the symptoms can last from a few days til indefinitely. i have found relief from the muscle spasms with rest, mmj, gentle exercise. i also take savella, neurontin, cymbalta, and symbyak daily and when mmj cant kill the pain tramadol, tylenol #4, flexoril (i have a back injury too), and im supposed to be taking ambien, too, but if i have a good strong indica like ak-47 i can sleep usually with that. he also has me taking fish oil, magnesium, and vitamin d. those three things are good for fibro and all 3 are over the counter. i would get started with that, it certainly wont hurt u. sativas are good for daytime so you can "premed" if ur going to do anything physical...also u can still function and will elevate your mood. depression is often a component of fibro too, and stress/depression will definitely aggravate ur symptoms. i would also recommend starting a log, something simple, to keep track of ur aches and pains and what activity (or emotion/stress) preceeded that. i am also very reactive to weather changes, and the last three days with all the rain i have been in constant pain on all meds AND MJ. It was hard even to brush my teeth this morning. writing this was the most energy ive spent all day. good luck to you mp. ur not alone.

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Aye!! Chocolate...Thanks :)

 

It was about a year ago I was told by my new PCP that I have Fibromyalgia. He ran quite a few blood tests to rule out Arthritis ( I was convinced I had it as was told that for a long time ) and I think, certain inflammation.

 

That was after 20-25 years of being treated for Arthritis. Sometimes the maximum dose of Indomethicin did not work.

 

Was put on a second anti depressant from the 50's, one of the tricylic anti depressants to help me sleep and with pain. Overall morning stiffness is improved and pain is lessened, except after doing some physical activity such as yard work or a lot of bending and lifting.

 

WebMD also has a section on Fibro, and an email they will send you with updates and news.

Yup, WebMD acknowledges MJ as one form of treatment.

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sorry to say it, but you might need to travel to get a diagnosis. i have no idea where kent county is! i have a doc at troy beaumont who is probably the best in the state with fibro...Dr. Samson Kpadenou... he has approx 35 fibro patients in his practice, and all of them are on disability...he gives samples for meds til you can get free meds thru pfizer, etc...i filled out the forms in january, still waiting. the meds are EXPENSIVE. diagnosis can only be made by palpetation of trigger points along ur neck, spine, etc...sometimes when mine flares up even clothing touching my skin hurts. my heart muscles hurt too(costochonditis), which can really upset u physically and emotionally...my mother has fibro, and 2 of my daughters. i have learned quite a bit from just searching online. taking care of yourself is of utmost importance.

fibro is usually triggered by a stressful event or injury. the symptoms can last from a few days til indefinitely. i have found relief from the muscle spasms with rest, mmj, gentle exercise. i also take savella, neurontin, cymbalta, and symbyak daily and when mmj cant kill the pain tramadol, tylenol #4, flexoril (i have a back injury too), and im supposed to be taking ambien, too, but if i have a good strong indica like ak-47 i can sleep usually with that. he also has me taking fish oil, magnesium, and vitamin d. those three things are good for fibro and all 3 are over the counter. i would get started with that, it certainly wont hurt u. sativas are good for daytime so you can "premed" if ur going to do anything physical...also u can still function and will elevate your mood. depression is often a component of fibro too, and stress/depression will definitely aggravate ur symptoms. i would also recommend starting a log, something simple, to keep track of ur aches and pains and what activity (or emotion/stress) preceeded that. i am also very reactive to weather changes, and the last three days with all the rain i have been in constant pain on all meds AND MJ. It was hard even to brush my teeth this morning. writing this was the most energy ive spent all day. good luck to you mp. ur not alone.

Wow. Sounds like me. My doctor started prescribing Lyrica for me about 4 yrs ago or so. It helped. But as time went on, the co-pays went out-of-sight and this medication put me into the dreaded "doughnut hole/no prescription coverage" by August of each year.

I haven't had it filled as I have replaced the Lyrica with MMJ and luckily have been able to decrease the other pills as well.

This weekend we made some mini-muffins (inspired by JuztBudz - they weren't as good as his - but mighty dang close) and just two of them in the evening and you don't need a Flexeril.

I know we are all different and we all have vastly different ailments/aches/pains/etc...

These past few days when the weather was rainy, high humidity, and rising barometric pressure my pain level nearly got out of control.

 

Mizerman

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There is no test that will pinpoint Fibromyalgia. What happens is, doctors will have you do a series of test, x-ray, exams. And other (sometimes painful) things, in order to rule out other conditions. This can take years, and other conditions may be found and/or misdiagnosed.

 

As christinax4 stated, and as presented in the link, keeping a journal is helpful. You don’t have to do this for ever, but it helps when speaking with your doctor. It also allows you to track those things that trigger your pain.

 

Be mindful of the medications you take for treatment. Opines are said not to be very effective for Fibro pain. Most of the others (Neurontin, Cymbalta, tramadol, and Tylenol) can have a negative effect on your liver and your GI track, so make sure you get regular testing. I take none of the Rx. They were causing me more problems than they corrected. I liked Ultram/Tramadol. But its usefulness is short-lived. Six months of usefulness is average. I get maybe 10 days; just enough for acute pain. For the lower back, I like the Lidoderm patches. These can be cut, and placed on other areas. Be sure to ask you doctor to write for 3 patches per day. The co-pay will be the same as if written for one box, but you’ll have more product.

 

If you have trouble paying for your Rx, your doctor can make arrangement with the company. The doctors may act like they did not know this, but they know. There are really no new drugs. It seems like once the patent expires, the drug company makes the old drug extra-strength, or they combine it with something else and call it new. Even with a co-pay, the new cast more. Try to stay with the older. Always ask for samples, even at the store. The pharmacy can delivery enough for you to try.

 

Exercise, even if it hurts. You will hurt more if you don’t.

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I have suffered with " fibrofuck" as I call it, for many years. At 1st the doctors would say it's all in your head. I worked in a mental institution, and it was very stressful, but I know my own body. I had widespread pain, tender points, fogged thinking, fatique etc.

Long story short, I searched out support groups and educated myself. I had to fire a couple doctors that didn't get it, but finally got the diagnoses.

People who don't have it, don't get it. My kids have never understood. Treatment varies to the indidual.

 

Here's another link for you......... http://www.fibromyalgia-support.org/fibromyalgia

 

My medical marijuana has helped me control my pain.

 

I have a lot of information, but don't want to make this too long. I'll try to get it to you.

 

Good luck, and have a blessed day

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  • 2 weeks later...
Guest Medicinal Patient

sorry to say it, but you might need to travel to get a diagnosis. i have no idea where kent county is! i have a doc at troy beaumont who is probably the best in the state with fibro...Dr. Samson Kpadenou... he has approx 35 fibro patients in his practice, and all of them are on disability...he gives samples for meds til you can get free meds thru pfizer, etc...i filled out the forms in january, still waiting. the meds are EXPENSIVE. diagnosis can only be made by palpetation of trigger points along ur neck, spine, etc...sometimes when mine flares up even clothing touching my skin hurts. my heart muscles hurt too(costochonditis), which can really upset u physically and emotionally...my mother has fibro, and 2 of my daughters. i have learned quite a bit from just searching online. taking care of yourself is of utmost importance.

fibro is usually triggered by a stressful event or injury. the symptoms can last from a few days til indefinitely. i have found relief from the muscle spasms with rest, mmj, gentle exercise. i also take savella, neurontin, cymbalta, and symbyak daily and when mmj cant kill the pain tramadol, tylenol #4, flexoril (i have a back injury too), and im supposed to be taking ambien, too, but if i have a good strong indica like ak-47 i can sleep usually with that. he also has me taking fish oil, magnesium, and vitamin d. those three things are good for fibro and all 3 are over the counter. i would get started with that, it certainly wont hurt u. sativas are good for daytime so you can "premed" if ur going to do anything physical...also u can still function and will elevate your mood. depression is often a component of fibro too, and stress/depression will definitely aggravate ur symptoms. i would also recommend starting a log, something simple, to keep track of ur aches and pains and what activity (or emotion/stress) preceeded that. i am also very reactive to weather changes, and the last three days with all the rain i have been in constant pain on all meds AND MJ. It was hard even to brush my teeth this morning. writing this was the most energy ive spent all day. good luck to you mp. ur not alone.

 

Thank you for taking the time to reply. I for sure know what the fatigue feels like and not even having the energy to do anything. Just thinking about all the crap that I go thru is exhausting. Your heart muscle comment really caught my attention. I don't mean to piggyback on some of your symptoms but they are real. When I was in the ER about 45days ago they said that they thought it was a muscular skeletal problem because of the places I explained were hurting and burning and she said with this muskular skeletal comes inflammation of the muscles surrounding all your organs. I am gunna read up on the term you used for the muscles surrounding your heart. Thanks for sharing your experiences and stories.

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Guest Medicinal Patient

I have suffered with " fibrofuck" as I call it, for many years. At 1st the doctors would say it's all in your head. I worked in a mental institution, and it was very stressful, but I know my own body. I had widespread pain, tender points, fogged thinking, fatique etc.

Long story short, I searched out support groups and educated myself. I had to fire a couple doctors that didn't get it, but finally got the diagnoses.

People who don't have it, don't get it. My kids have never understood. Treatment varies to the indidual.

 

Here's another link for you......... http://www.fibromyalgia-support.org/fibromyalgia

 

My medical marijuana has helped me control my pain.

 

I have a lot of information, but don't want to make this too long. I'll try to get it to you.

 

Good luck, and have a blessed day

 

Thanks for the links Geda, and the imgs. I too have heard the whole "its in your head" bs from Drs. And I would tell the Dr if I am creating this hell all in my head then I would rather be dead. These Drs can be very discouraging and leave you feeling hopelessness. Thanks for your advice and story.

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Guest Medicinal Patient

And thank you for your tips as well Ms Chocolate. I have had Neurontin before and it makes me feel like im floatin an not in a good way either! Tramadol does seem to help some but like someone said, its short term. The anti inflammatories seem to help but have jacked up my stomach over the years. I currently have no meds or way to relieve my pains but will keep the sample thing in mind. Thanks

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I was told at first I had lupus, lol, its hard to find good help these days

 

I've been to 7 different docs and got 7 different diagnosis's for the same condition. I don't have much faith in the medical field but I have learned if you think you have a condition, go to the top doc who specializes in your condition.

 

I was having shoulder trouble and my doc sent me to everybody but a shoulder specialist. When I took it upon myself to pay the shoulder doc I finally got the correct diagnosis.

 

One big problem in getting quality health care is that doctors tend to send their patients to specialists in their own group. It's not about getting their patients to the best doctor it's about satisfying their constituents.

 

There is a test for fibro but you have to go the right doctor. My uncle has a severe case of Fibro and claims his doc is the best in the state. I don't know his name but he gives a special fibro pressure point test. There are supposedly several points on your body where just a soft touch will send a person with fibro into severe pain.

 

I'll try to contact my uncle and get the docs name if anybody is interested.

 

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  • 2 months later...

 

 

There is a test for fibro but you have to go the right doctor. My uncle has a severe case of Fibro and claims his doc is the best in the state. I don't know his name but he gives a special fibro pressure point test. There are supposedly several points on your body where just a soft touch will send a person with fibro into severe pain.

 

 

 

 

tricloud, i am an ohio resident thinking about moving to michigan in the next year. when i was 13, i went to a childrens rheumatologist in the cincinnati area who performed this 'pressure point test' to determine if my aches and pains were indeed fibromyalgia after blood tests had ruled out lupus. this doctor diagnosed me with fibromyalgia. i do not remember his name however! i am now 18 and intend to go to college in michigan. i would really like to find another doctor in michigan who could test and diagnose me a second time because a lot of my medical records have been lost... when i move i would like to obtain medical marijuana for my condition,, is it a qualifying ailment in your state? if so please speak to your uncle and message me with this doctors name.

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It took my wife 10 years to get a diagnosis of fibromyalgia. It has been 10 years since then. During the last 20 years I have had some issues myself. The biggest symptom is vasculitus (rash on legs) and severe muscle and joint pain. I went to U of M in 1990 and was told there are: "Two kinds of vasculitus. The kind we worry about and the kind we don't. You have the kind we don't." Easy for them to say. A percocet prescription and out the door I went. Over the years one thing I noticed is whenever I was getting over a cold or the flue I would get an attack. It was like my immune system was continuing to attack soft tissues instead of turning it's self off after it had done it's job on my cold.

 

A year ago I had an attack that was really bad. I could not stand up from a seated position without help. As I started getting better I did my own research. After all doctors were being of no help. My symptoms and even lab results indicated Sjogren's Syndrome to me. So I went back to the doctor and after listing all my symptoms and asking him to take them as a single condition he came to the same conclusion and was very surprised I had found it. Off to a rheumatologist and I have a confirmed diagnoses and it only took 20 years and in the end would not have had one had I not found it. There are even less treatments for Sjogren's than fibromyalgia.

 

What all this comes to is my research also uncovered that Sjogren's and Fibromylgia are closely related and often time are misdiagnosed for each other. Now isn't it odd that my wife and I worked in the same factory and both of us have conditions that could be interchangeable? To further add an oddity factor to it only 10% of Sjogren's Syndrome suffers are male and even more rare is to have the lupus like symptoms that I have.

 

I'm not even convinced that they are not caused by the same, yet to be discovered, virus/bacteria/chemical imbalance. They sure seem like slightly different variations of the same thing. So do your research and make sure you let your doctor know all your symptoms.

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