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frustrated with dr's trying to diagnoses this
9 Replies
hesmyeverything - November 19

Hi everyone,

New to this site tonight. Wondered how many dr's you all went through before you found one who diagnosed you? I've told mine about my joint pain, foot pain, (almost fall out of bed in the morning), severe fatigue, headaches (3-4 a week) The only thing i'm on right now is 2 tramadol (50 mg each) at night, or the body aches, leg aches are so bad,i just rock back and forth on all fours, and can't sleep. Been on those for well over a year or so.

I straight up asked the dr if i could have fibro, she said possibly and gave me a trial pack of (Savella) a new drug for fibro, it was a 2 week trial period, she told me to take it, and if it helped the pain, THEN she would send me to a rheumatologist. I brought it home but never took it. Call me crazy, but i think you should be diagnosed before you give someone medication..

People keep telling me how tired i look, and i don't sleep well, i average about 3-4 hrs a night, that's an hour here, an hour there. I'm so frustrated, because i know this is hard to diagnose, i don't know if i should switch dr's, i just don't know what to do?

If anyone at work tries to give me a massage, they barely touch me, and i'm like ow, ow ow, around my hips and upper thighs,i feel like i'm bruised, but i'm not. My mom told me she has it, but i don't know if she was ever actually diagnosed or not.

I know i'm just sick of feeling like crap. i'm only 47, and feel like i'm 70.

Thanks for listening everyone.

 

bwelladjusted - November 19

I understand how you feel! My co-worker and best friend tried to be sweet and rub my neck for me, and as soon as she touched me I nearly went through the roof! I often feel like I'm 80 years old, and I'm not quite 20!
I think you were very wise not to take any medicine before you're diagnosed. I've chosen not to take any prescription medicines at all, but that's certainly a personal choice. But no doctor should just experiment with drugs instead of doing a proper diagnosis.
I would consider finding a better doctor. I know there is a website online (though I can't remember what it is), that helps people find more fibro-friendly doctors. A well-educated, open minded doctor can be a terrific asset to you.
Your post on the other thread was very refreshing. Your faith in the Lord will greatly strengthen and encourage you on the bad days (and the good as well, of course). He truly is our refuge and strength, a very present help in trouble.
God bless you. I hope you find some answers and relief.

 

Canada17 - November 19

My original doctor (who had been my doctor from the day I was conceived, he even delivered me) told me it was all in my head and wanted to send me for hypnosis...to himself. He wouldn't even sign off on insurance paperwork from a car accident I was in - that sent me downhill - so I had to stop because I couldn't afford to pay for it.

Three years later I finally found a new family physician who was accepting new patients. He sent me for what felt like thousands of tests over the span of eight months. I had x-rays and ultrasounds done, as well as all kinds of blood work. After the US I thought I was dying because it hurt so badly when she was scanning my ribs and looking at my spleen. She just looked at me scornfully like I was faking the pain and said, "That shouldn't hurt."

While I was waiting for all the results I did my own research. My doctor only knows what I remember to tell him when I'm at the appointment. After finding this site and reading over all the information I realized that I had FMS. I told him and he immediately did the tender points test and confirmed it. He then referred me to a chronic pain specialist and a physiatrist. The chronic pain clinic sent my doctor a letter back telling us the wait was five years for an appointment! FIVE YEARS!!! Why even bother saying I could get one?? The physiatrist is fantastic!

My doctor did prescribe me some medications to try, some worked but I didn't tolerate them well. Others I didn't tolerate at all - one of the reactions scared my husband so bad he wanted to take me to a hospital!

I find it strange that your doctor would recommend that you take a medication for a disease that you have yet to be diagnosed with and then tell you if it works she will send you to a rheumatologist. The strange thing about FMS is that what works for one person's FM exacerbates it in another - giving you Savella is hardly an accurate diagnostic tool.

The only prescription medication I am currently taking is Naproxen - and I'm trying to avoid taking it as much as possible. It isn't really effective for everyday pain relief, just bad flare ups. My doctor is helping me to get a medicinal marijuana license, it helps with all my symptoms. I am also very conscience about what I am putting in my body. Take a look at the treads on the Fibromyalgia Diet board.

Have you had blood work done to rule out any other illnesses? You don't necessarily have to wait for her to refer you. Try calling your local hospital, they usually have some sort of a referral process.

Good luck, and remember you are not alone.

 

axxie - November 19

Welcome hesmyeverything, you came to the right board, we are bunch of people who believe in helping others, first to find diagnose and to support you in your journey.

I’m sorry for the way, you have experienced medicine. You need a new GP, and you need to get copies of all your tests, if tests have been done. Everything you describe, represents Fibromyalgia, I believe you were misdiagnose, you need to find a doctor who will listen and who really knows fibromyalgia.

Find the right doctor. It's important to find a doctor who cares about you -- and wants to help you. It's very common, physicians having very little time. Sometimes they don't really hear everything a patient says.
Never stay with a physician you don't like or trust. It's not all in your head -- and while you may be depressed, depression is not the whole picture of fibromyalgia. Pain is very frustrating. In the medical community, they probably don't have the empathy for pain that should be.
Get emotional support. A therapist's support can be helpful when you're dealing with fibromyalgia. Fibromyalgia has such a stigma. Sometimes it is really helpful to see a therapist -- not because you're crazy, but because you have to deal with pressure and stigma. It's nice to have someone objective to talk to.

Fibromyalgia is a chronic condition that causes disabling pain all over the body -- as well as stiffness and tenderness in muscles, tendons, and joints. It is most common among women ages 35 to 55. Although it's one of the most common muscle problems. There is no inflammation or joint damage, as occurs with arthritis. There is no damage to internal body organs, as with rheumatoid conditions like lupus. It is called fibromyalgia syndrome because it is identified by a collection of symptoms.
The list of possible fibromyalgia symptoms is a long one: chronic muscle pain; muscle spasms or leg cramps; sleep problems; severe fatigue; anxiety; depression; morning stiffness; headaches; difficulty concentrating; skin sensitivities; irritability; intestinal problems.
But these, are also common to liver disease such as, lupus, Lyme disease, thyroid dysfunction, heart disease, arthritis, degenerative joint disease, chronic fatigue syndrome, irritable bowel syndrome, and other disorders -- and therein lies the difficulty in diagnosing fibromyalgia. While it's not clear what exactly triggers fibromyalgia.
Fibromyalgia patients have higher levels of two substances -- a nerve chemical called substance P, and nerve growth factor in the spinal fluid. We also have lower than normal levels of the brain chemical serotonin, as is also true with people suffering from depression and anxiety. All this produces a dysfunction in the body's ability to process pain, and creates supersensitive nerves throughout the bodie, a rheumatology specialist should be able to clearly diagnose you.
To figure out what's going on, doctors diagnose fibromyalgia by examining specific "tender points" on the body. There are 18 specific tender points; specific locations that are tender for everyone. But for people with fibromyalgia, these points are significantly more tender. People are more sensitive at those points. A dysfunction in the central pain processing amplifies the sensation. Tenderness or pain in at least 11 of these 18 points is the hallmark of fibromyalgia. Also, the pain is widespread on both sides of the body, neck, buttocks, shoulders, arms, upper back, and chest. Tender points are around the elbows, shoulders, knees, hips, back of the head, and the breast bone. The muscle pain can range from mild discomfort to severe enough that it limits a person's everyday life, including work and social activities. The pain is often described as burning, gnawing, throbbing, stabbing, or aching. When the person relaxes, the pain may be more noticeable -- and less so when you are active. The result: Everyday sensations of discomfort and pain are amplified beyond the norm. Slight bumps and touches can cause disabling pain, if you have fibromyalgia. This pain can be aggravated by outside factors such as noise, weather changes, and stress.

Prepare for your appointment. Before meeting with the doctor, prepare to accurately communicate your symptoms. Think about, what your symptoms are, and when they started.
How long they've been going on -- and whether it's been continuous, or off and on. Have you noticed any triggers for your symptoms? How do your symptoms affect you? Is pain sharp, a dull ache, does it cause nausea? How do symptoms affect your feelings? Does pain make you depressed or anxious? How do symptoms affect your work or home life? Are you very fatigued and can't do normal activities? What drugs, herbal remedies or supplements are you taking? What surgeries have you had? What current treatments has another doctor or specialist prescribed?
Keep a pain journal, doctors will listen more if you keep a daily record of how you feel, even if it's just for one month or for three months. In your pain journal, make note of intensity of pain (on a scale of 1 to 10), what you were doing at the time, and how you felt emotionally. It will help you and your doctor see patterns in the pain.
There are no lab tests or scans that can help doctors diagnose fibromyalgia. But various blood tests can help them rule out other medical conditions. Some patients need to have respiratory problems checked or get a sleep apnea study done. On occasion, the problem is sleep apnea or snoring, both of which disturb sleep.

With all this said, I hope you don't feel to overwhelmed, and please do ask us questions, you we will help you as much as we can.

Sandrivers

 

Fantod - November 19

Hello hesmyeverything and welcome to the forum.

It is apparent to me that you need to find another doctor. It is highly (and I cannot emphasize that enough)irresponsible of your current physician to give you medication for something you have not been formally diagnosed as having. Personally, I would be making a formal complaint to my health insurance company and to the hospital system that doctor is associated with.

The doctor best suited to treat Fibromyalgia (FMS) is a rheumotologist. There are other conditions that mimic FMS (like a throid problem)that will have to be ruled out. If you have recent bloodwork, get copies to save time and expense when you see the rheumotologist. That being said, not all rheumotologists/doctors are created equal. There are still many doctors out there who do not believe in FMS or are not up to date with treatment protocols. You should call your local hospital physician referral service and ask them for a rheumotologist and/or a pain specialist (I have both) with an interest in FMS. Or you can go online to the National Fibromyalgia Association website and register. Then you can see a list of fibro-friendly healthcare providers in your area. It is not that hard to diagnose if you have a healthcare professional that has a modicom of care for their patients.

Fibromyalgia is a disorder of the central nervous system that causes widepread chronic pain. The mechanism that causes it is not understood. There is no cure, but it can be managed with certain classes of prescription medication. FMS does not respond to OTC remedies. FMS is recognised by the National Arthitis Foundation and the Center for Disease Control.

There are now three prescibed drugs to treat FMS. They are Cymbalata, Lyrica and Savella. Cymabalata is an antidepressant that addresses both the pain and depression that usually accompanies FMS. I use it myself and have had good results. You may have seen television ads for Lyrica. The primary complaint seems to be rapid weight gain. Savella is new to the US market this year. It has been used in Europe for decades. People either seem to do well with it or cannot tolerate it at all.

FMS disrupts the deep sleep cycle with short bursts of high intensity brain waves. Your muscles need deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. Amitriptyline is usually prescribed for sleep issues associated with FMS.

It is going to take time and a lot of tinkering to find the right combination of medication and doseage to make you feel more comfortble. As a rule of thumb, you should allow at least two weeks and even up to a month before you start feeling some relief.

You should also be tested for a Vitamin D deficiency which is common among people with FMS. This is done with bloodwork. Another option would be checking for gluten sensitivity. The most accurate test is done using a stool sample. Either of these issues will also cause widespread pain.

Diet is very important with FMS. Deep fried foods, lunchmeat (nitrates) and anything containing an srtifical sweetner (including Splenda) should be avoided. All of these items will probably incease your pain level. To replace an artifical sweetner, look for Truvia or Sun Crystals in the grocery store. They are made with the nontoxic Stevia plant.

I also have problems with touch which is called allydonia. Many people with FMS have this problem which can be mildly annoying or extremely painful. Mine seems to come and go. I'm having problems with it at the moment. Any pressure against my skin is painful so my sleep is more disrupted than usual and I am only getting dressed when absolutely necessary.

I hope that some of my comments are helpful to you. Keep in touch and let us know how you are managing. Take care and God Bless

 

ptalana - November 20

Hi hesmyeverything and welcome,
Many of us have experienced the challenges of finding understanding and knowledgable health care providers that are Fms friendly. I have had the same gp for almost 25yrs now. Following my accident he continually told me due to the fact I was 44 it would take approximately a year to fully recover from my injuries. As I approached the year mark instead of getting better I was getting worse. At this time he started telling me it was all in my head!!!! I was devestated and began taking my hubby with me to all my appointments. I underwent every test imaginable, hubby at my side. I began taking charge of my health at this point and began researching on the internet. I would take all this info to gp and try to figure out what I was suffering from. At this time we believed it was Ms, but after a horrendous appointment with a smug nuerologist found out it wasn't. We went to see gp feeling lost, but discovered my gp had just come back from medical convention on Fms (what a coincidence). He greeted us saying I think I know what you have and proceeded to do tender point analysis and I had all 18 points!!! My hubby and I were so relieved to get a diagnosis finally. And since then my doc has gotten me every referal I have requested, although in Canada it can take upwards of a year to get appointments. My doc has told me he is not a Fms specialist but wants to work with me to get all the help I need. Also have never heard "it's all in your head" since!!!
My hubby and I realize how lucky we were that my doc has done a complete 360, and is working with us.
As others have mentioned your hospital should have a physician referal service that I would suggest you utilize. Having the right health care providers is imperative to your care. I currently see a rheumatologist, and am waiting to start a pain clinic program.
I wish you luck and once again welcome to our fibro family, Patty

 

hesmyeverything - November 20

Thanks for all your comments. Glad to hear I'm not the only one thinking it was dumb to give me meds before i'm diagnosed...Seriously, would she give me chemo, and if i reacted the right way, then she would send me to an oncologist? That is just backwards, and it shows me she doesn't want to take the time to try and diagnose me. I know this will sound stupid, but she is a client of mine at the bank i work at, and if i switch, she may close her accounts. I feel like i'm stuck between a rock and a hard place.

Just some more background...I have a protruding disc at L4 L5 (lumbar spine) and also C2 and C3 in the neck area (probably why my shoulders and neck hurt ALL the time. I've had the nerve root injections at the lumbar spine (3 of them) and i had no pain for about 3 months, then it came right back. I was mis-diagnosed with lupus about 10 years ago. I've had numerous blood work, and mri, cat scans, ultrasounds. with nothing to show. i definitely have bladder issues, up at least 4-5 times a night. they did a sleep study on me, because of my not sleeping, didn't show much, i have a very slight case of sleep apnea, they tried meds, that didn't work,i just gave up and quit taking them. a few months ago, i totally lost my appetite, couldn't eat more than a few bites, lost 15 pounds in a month, plus i was nauseated ALL day long, which contributed to my not eating, the dr thought i had an adrenal gland tumor, (urine was off the chart with adrenaline) bp was 160/97 pulse was 112, thought my heart was jumping out of my chest, so i did a 24 hr urine test, that negated the first urine test, except i only put out 1/10th of what i should have in 24 hours, sent me to a urologist, who point blank said "go home, there's nothing wrong with you" (i reported him) made me feel better, oh, did i mention, when i asked for my results, they gave me the report of a 66 yr old woman with multiple fistulas (that's why i reported him, cause if that's the report he looked at, obviously it wasnt mine, how did he not know that wasn't me, and did he even read MY actual results.

Can you all see why i can't stand dr's??? That's all happened the past year and a half.

I know i may have to see many before i get the right diagnosis, but whenever i visit a new dr, even though i have my test results, they want to start all over with new tests, and those get to be expensive...

Thanks again for letting me vent.

 

Fantod - November 20

hesmyeverything - I would think that your health rather than a business relationship through your bank should be a priority. The only person who is suffering is you.

We've all had at least one bad experience with a doctor with regards to Fibromyalgia (FMS) or something else. I know that you are frustrated but inaction is not going to fix the problem/s. FMS places a huge amount of stress on the body. And, the long a chronic pain cycle goes on, the harder it is to manage or stop. I sincerely hope that you will consider seeing someone else for a better standard of care. Take care and enjoy the weekend.

 

lorieholtz - November 20

hesmyeverything,
i can tell u by experience that fantod it very acaknowlogable in this. very acutally. drs can really run a number on us and make us feel like we are just making things up. the factor is finding the right dr and omg its like a full time job in doing so. the dr i went to see the other day and i used to work for him is actually doing a lecture on fms. he said he would give me a dvd copy. he also told me that his wife had developed this as well. i'm anxious to see this and i wish i culd get a copy to all of u as well
tc
lorie

 

hesmyeverything - November 20

Fantod,

I'm sure i said that wrong...I could care less what the dr thinks, i've been wanting to tell her how unprofessional i thought it was to medicate me without diagnosing me. but you have to know that at my work environment, they would think nothing of blaming me if she moves her business somehwere else. BUT i'm not going to let that stop me. My parents have a very considerate dr, he's younger and knows more about these things, and she told him about me, and he said he would be thrilled to have me as a patient. So i will be making an appt with him. What's going to bite is, this current dr says on her website that they charge for all copies of records, she's probably going to sock it to me... I have some of the bloodwork tests and stuff, but not all of them.

I would think that i would need a referral from my family dr to go to a rheumatologist.

Thanks for all your input guys. I can tell it's getting later in the evening, i am hurting all over, seems worse at night, and when i first wake up. UGGGGGGHHHHHHHH

 

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