Aa
How?
I know I have Fibromyalgia. Have been to my doctors complaining for the past several months about pain all over (like having the flu 24/7). I've felt these symptoms for years, but now getting worse. I'm 48 years old. I also have history of back pain (herniated discs, degenerative disc disease, spasms, scoliosis, etc...), but this pain is widespread (arms, legs, upper back, shoulders). I've been told to go to a rheumatologist. How do I get someone to listen to me? I'm not going crazy, I know what I feel and I also get ignored. I've actually informed my doctors that I know I have fibro. I've been told that a rheumatologist is the one to diagnose me. I'm ready to scream. I;ve had numerous tests. How do I get someone to test my pressure points and take me seriously? I don't want to continue going back & forth for several more months being in constant pain and getting worse. What to do?
The worst time of the year for me is winter to spring soltisis and the summer to fall. Winter is the worst season. The cold in so painful. The weather changes are more dramtic.
I can tell when a big storm is coming by the way my fibro starts talking.
In June the fibro took on a new way. I went to a business meeting with my daughter. I was in and out on consciousnous (SP), got up and walk straight into a chair and bounced of the wall and I had to grab hold of something to steady myself. My speach became garbbled and I was so weak. I ended up in the hospital over night. They checked for a stroke, all the symtoms were there. All the test came back negative. The ct was clear and the did a doppler on me caroted arteries were clean. My oldest daughter is a nurse and she thinks it is a new way fibro is affecting me.
Fibro affects more than just the muscles. It can cause your mind to be fogging, irritalbe bowel syndrome, chronic fatigue.
I can tell when a big storm is coming by the way my fibro starts talking.
In June the fibro took on a new way. I went to a business meeting with my daughter. I was in and out on consciousnous (SP), got up and walk straight into a chair and bounced of the wall and I had to grab hold of something to steady myself. My speach became garbbled and I was so weak. I ended up in the hospital over night. They checked for a stroke, all the symtoms were there. All the test came back negative. The ct was clear and the did a doppler on me caroted arteries were clean. My oldest daughter is a nurse and she thinks it is a new way fibro is affecting me.
Fibro affects more than just the muscles. It can cause your mind to be fogging, irritalbe bowel syndrome, chronic fatigue.
First, Fibro is an Auto immune diseases . I understand where you are. I was diagnosed in 1989. I was an aerobics instructor for finve years. The longer I did exercises, the weaker I got. I should have been in peak physical condition. I would climb the stairs and my legs mucles would screem at me.
In my early years the fibro flair would be once a year. Then is graduated to 2xs a year. 3xs, 4xs and final all the time. With medication I can control the pain better. I sleep in a reclimer to ease the pressure on the triggers.
I also have degenerative disk desease, missing disks in my lower back, no cartledges in my knee and advance to my ankles and feet.
I went to a rhumatologist and got med that helped. Find a doctor to help you.
On good days, do your thing with moderation. On bad days, do whatever that takes your mind off the pain. One fibromite is a dancer, and on a good day she says, "At least I danced." I find that inspiring.
I hope this helps.
In my early years the fibro flair would be once a year. Then is graduated to 2xs a year. 3xs, 4xs and final all the time. With medication I can control the pain better. I sleep in a reclimer to ease the pressure on the triggers.
I also have degenerative disk desease, missing disks in my lower back, no cartledges in my knee and advance to my ankles and feet.
I went to a rhumatologist and got med that helped. Find a doctor to help you.
On good days, do your thing with moderation. On bad days, do whatever that takes your mind off the pain. One fibromite is a dancer, and on a good day she says, "At least I danced." I find that inspiring.
I hope this helps.
your symptoms sound a lot like my Fibromyalgia symptoms the "spells" I thought Plateletgal was the one who posted about the spells but it was actually you. Everything you described is what I get with Fibro. i did have my Right thyroid removed due to a huge nodule on it a couple years ago but have had all negative tests as far as the thyroid goes,,even tho I show signs of thyroid disease. And thats very good yuor going to take a list to your doc,,you need to be heard,,,how can anyone live feeling like this on a daily basis.
I was diagnosed by a Neurologist,,I didnt even consider Fibro and never heard of it,,I walked in he did the pressure point testing and some other things and there was my diagnosis,,my Internal med doc also diagnosed me with it,,he said I was the poster child for fibro.
Plateletgal I also get the SPELLS when standing,,i see weird spots and start getting light headed and not bad dizzy but somewhat and just start feeling real bad,,,when I go to Costco or stores were I have to walk around for a long time I get a scooter,,it works.
jo536 I hope you can get into a doc quick and get diagnosed so you can get some relief
Plateletgal I also get the SPELLS when standing,,i see weird spots and start getting light headed and not bad dizzy but somewhat and just start feeling real bad,,,when I go to Costco or stores were I have to walk around for a long time I get a scooter,,it works.
jo536 I hope you can get into a doc quick and get diagnosed so you can get some relief
"Auto immune diseases are prone to run in FAMILIES. "
Yes they are. There are reasons as to why this is... not sure yet what role genetics play, but L-form bacteria (being passed to the fetus) and other forms of transmission among family members is common.
Yes they are. There are reasons as to why this is... not sure yet what role genetics play, but L-form bacteria (being passed to the fetus) and other forms of transmission among family members is common.
I was diagnosed with hypothyroidism and hashimoto's thyroiditis which is an auto immune disease and I had the same symptoms as well.As I am related to someone on this forum THEY really need to be retested as a tsh level of 5.0 IS high.Auto immune diseases are prone to run in FAMILIES.
"My newest symptom is not being able to stand for any length of time. I break out in a sweat, start seeing spots, feel like I'm out of body, and feel faint. I have to squat. It is very embarrassing when out in public. I've been calling them spells because I not only get them when I'm out in the heat, I got one day before yesterday sitting down in the a/c. Its scary."
I hear ya. When my CFS took a turn for the worse... I noticed that I had intolerance to heat. And here I live in the west and there are few days that the sun isn't shining here !
Is your blood pressure low ? And have you had tilt testing done ? (if not... you may want to ask your physician about it)
Good Luck !!!
I hear ya. When my CFS took a turn for the worse... I noticed that I had intolerance to heat. And here I live in the west and there are few days that the sun isn't shining here !
Is your blood pressure low ? And have you had tilt testing done ? (if not... you may want to ask your physician about it)
Good Luck !!!
Just a foot note in addition to what everyone said....
My FMS was diagnosed by a Gereal Practiioner who was aware of both FMS and ME/CFS.
More often than not, docs shy away from us, because they are taught to cure and some of us pose a huge challenge to them when we don't response favorably to their treatments. I was referred to an Infectious Specialist at the begining of my journey, he guaranteed that I would be 'cured' in 3 months (I should have run away asap). 4 months passed, no improvement with me. He dismissed me. Goes to show, a good doctor as PlateletGal pointed out in her post, is more important than his specialty.
To Mellissa......go to a hospital if you have to , and arrange installment with them. They have to take you as an ER patient. Do you have community clinics in and around your neighborhood? Tell them your pain, most of the time, they are willing to take installment plan as well.
Best of luck to both. Please know that you are not alone in this.
Kit
My FMS was diagnosed by a Gereal Practiioner who was aware of both FMS and ME/CFS.
More often than not, docs shy away from us, because they are taught to cure and some of us pose a huge challenge to them when we don't response favorably to their treatments. I was referred to an Infectious Specialist at the begining of my journey, he guaranteed that I would be 'cured' in 3 months (I should have run away asap). 4 months passed, no improvement with me. He dismissed me. Goes to show, a good doctor as PlateletGal pointed out in her post, is more important than his specialty.
To Mellissa......go to a hospital if you have to , and arrange installment with them. They have to take you as an ER patient. Do you have community clinics in and around your neighborhood? Tell them your pain, most of the time, they are willing to take installment plan as well.
Best of luck to both. Please know that you are not alone in this.
Kit
You know, it is funny that you said that. I get the feeling that my doc is just not "into" treating me. If I were a doctor and had a patient like me it would eat at me, I would want to find the cause. I've been tested for hypothyroid 3 times and each time it has come back positive and I'm still not on meds. It just makes me feel like I'm spinning my wheels. Throwing money to him just so he will fill my lortab and soma prescription. I have met a few people here that say I am very lucky to have a doctor prescribe me narcotics because theirs will not. I'm very frustrated, I have an appointment on the 21st, I'm going to bring my list of symptoms which I've never done and MAKE him listen to me. Even if he blows me off I just have to get it off of my chest. My newest symptom is not being able to stand for any length of time. I break out in a sweat, start seeing spots, feel like I'm out of body, and feel faint. I have to squat. It is very embarrassing when out in public. I've been calling them spells because I not only get them when I'm out in the heat, I got one day before yesterday sitting down in the a/c. Its scary. I have new pains where I haven't had them before, my knees...Lord, you use them for everything and when they hurt there is nothing you can do.... I guess I'm just at my wits end right now. I just hope he can give me answers or some new treatment. I've already tried Lyrica and Cymbalta, both gave me severe panic, anxiety and heart palpatations, I had to get off of them within a couple of weeks. Its sad because when he told me about both of those I thought it would be a "miracle" cure, I had my hopes up only to be shot down. I really think there is more to my condition than just FM. I'm quite sure I have a thyroid problem and auto immune problems. I really believe I have yeast over growth in my body but my doctor doesn't believe in that. Without insurance what do you do????
I've heard that some well known rheumatologists are fed up with getting fibro patients. They feel that neurologists should be seeing them. So unfortunately.... many fibro (and not to mention... CFS) patients are left wandering around trying to find help.
The only person who diagnosed me was a rheumi and it was pretty quick for being diagnosed with FM. From what I understand some people are not diagnosed for YEARS. You will probably have to go through all of the tests again with a rheumi but it is worth it. I would try to find one who specializes in FM or CFS, that way you will be assured to be diagnosed quicker.
Just so everyone knows... the links on that page are not just to holistic physicians. Many of the physicians are general practitioners or rheumatologists.
I also have the same issues you describe and a diagnosis won't take your pain totally away. You will feel vindicated though. You are looking at years of different meds, concoctions of meds and suppliment, exercises, stretches, yoga for Fibro or back issues, rest, adjust your way of living for the rest of your life. You need to be up on your knowledge, maybe see a councelor for chronic pain w/ depression/anxiety, possible sleep studies. I have had these issues since 2000 or before and I continue to get worse. Had to stop working 22 months ago due to my medical issues and medicine side effects. Best of luck to you and think positive but don't push yourself so hard.
Your doctor should diagnois you but a Reumatologist really deals with Fibro and really knows what to do and how to treat symptoms. There are a few tests to be done and some done just to rule out other like syndromes and diseases. Why does that make you so mad, to have to go to a RA? Don't fight it, just do it.
I was diagnosed by a rheumatologist. If your insurance covers these types of Drs, then be sure to ask their appoinmnet person if that particular DR knows how to diagnose fibromyalgia. I have degenerative disk disease also and have several lower back disk problems myself so I understand the pain you are in. I wish there was some more advise I could give. :-(
Jamy
Jamy
Hi ! You should consider finding a physician who specializes in fibro/CFS. Here's a link to my website and I list many other links that can help you find what you are searching for.
http://groups.msn.com/Neuro-ImmuneSupport/physicianscenters
Hugs,
PlateletGal
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