What Do You Do When No One Will Listen?

By Leslie Rott, Health Guide Monday, April 23, 2012

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In a previous post, I talked about how one of my main symptoms that had lingered while I was on Methotrexate and feeling pretty good was headaches. These headaches are different from the types of headaches I used to get. Rather than being my whole head, there is intense pounding on eithe...

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Rena

4/23/12 12:13pm

Hi Leslie, I know how you feel. I have experienced this several times myself, where you have a specific symptom and no one will listen and help you. We deal with enough pain, we don't need any more pain from side effects or etc. I am currently investigating a change in MD's because of the same issues. What I have discovered is that Primary Medical Doctors identify the symptom and then prescribe medication for that symptom. Naturopathic Medical Doctors look at the symptom and then consider what is causing the symptom and then try to ease/illiminate the symptom in a more natural way, like diet, change in environment and possibly medications as well.

I think the general attitude of the medical field is swinging back toward exactly what we RA peep's really need. Someone who will listen and look at the bigger picture instead of just throwing a pill/presription at us and charging us for an office visit!

Hope you get some relief. Medication side effects hare awful. I have dealt with a lot of those as well. Keep trying. Don't give up and just accept that this is just how it is going to be. You deserve someone that will listen and help you to feel better. Good luck. Take care of You! :)

Sylvia Welborn

4/26/12 12:59pm

Hi Leslie, I also take Methotrexate injections weekly. I can identify with your headache's since it seems with me that after the injection and for approximately 2-days thereafter I suffer with a pounding in the top of my head and feels like a strong pluse in my neck. They tell me that this is a side effect of the treatment, and so I have learned to live with it. If I come across an answer I sure will post it as I know you will. Good luck,

lcfrey

4/26/12 3:51pm

I think you should probably find another neurologist. I've always had migraines, but when they got worse, I went to a neurologist. He did an MRI and another test I can't remember the name of. It measured brain waves. When those were normal, he started treating the headaches themselves. I have tried MANY drugs to prevent them. None has worked for very long.

As far as drugs to stop a headache, I have found that Imitrex is the most brutal. Others, such as Zomig or Maxalt, as slower but more gentle.

I never considered that maybe the increase in headaches is related to Methotrexate or any of my other drugs. Something more for me to think about.

Julie

4/26/12 6:46pm

Hi Leslie,

I am Medical Assistant who too has RA.

I see this happening all of the time, especially with specialists. They only focus on what they know and are trained in. They do not look at the big picture or try to see how your symptoms or mulitple illnesses could be related.

I have 3 autoimmune diseases; RA, Hypothyroidism and Celiac. I know that they are related. I go do different MD's for each. Family Practice or Internists are good for the basics but they send you off to specialist. I too would like one MD to really know me well and put it all together.

You too have to be your own advocate. I listen and may take the written RX but always do research before I take a new med. I ask a lot of questions and am not always compliant. I sometimes feel that I was treated like a text book pt when I am a zebra in a heard of horses. You have to speak up.

I too watch the show, Mystery Diagnosis and can't believe how people go sometimes years without a proper diagnosis. You have to sometimes just keep going to differnet MD's find one who works for you. Naturopaths can be a wonderful alternative but they cannot always do the tests or procedures that you need.

Good luck and be well. You are not alone.

Julie

~Mary

4/28/12 10:37am

Hi Leslie: I understand what you are saying. It used to be that you went to the doctor and they treated you. Now, you go to your Primary and are sent off to specialists, who do not know you, listen to you, or talk to each other. As for the headaches, I too am on Methotrexate and get the terrible life stopping headaches that send me to bed for a minimum of one day. Last week the stiff neck and headache were so bad that I was in bed for over 24 hours, but because I had things to be done the next day, I went to run errands with my granddaughter and husband. I almost collapsed in the store. The next day my husband took me to the doctor, who in turn sent me to the ER. Needless to say, after hours in the ER lobby with the light sensitivity, fever, chills, cold sweat, and the overwhelming "need" to lie down, I was taken back. By this point, full blown anxiety attack and all around 'crazy' could be added to my experience. The. EKG and blood work were normal as was the chest xray. But no matter how many times I explained what was going on, they said only it could be a pre-heart attack. I checked myself out AMA, and went home to go to bed, where I stayed for the next 4 days. I followed up with my regular doctor and he is sending me to an ENT, cardiologist, urologist (there was blood in my urine) and a gastroenterologist. Yay! More doctors. Oh, and I have a prescription for Imitrex. Funny thing, one of the men at work got sick a week after me. Similar symptoms, he was tested and told that he as viral meningitis. Makes you wonder.... Hang in there. And never forget, doctors have practices, because they are practicing AND they work for YOU. ~M

5/ 4/12 11:24pm

I don't have them but I believe you. I have gotten so used to Drs. not listening and not believing me that I gave up. My Rheumy said that RA and Fibro pain isn't bad enough to make you cry. He also says

RA is only in you hands and feet. What can you do? When pain medication is involved you can't Dr. shop.

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