Is it just me, or is the Medical profession just stumbling in the dark?

By Kate Tuesday, March 23, 2010

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This is actually an 'Hello everyone'. So far, as far as I know, I'm healthy. My sister in law, who is 54 years old, told me about her diagnosis of fibromyalgia. I may be a busy body, but if I am, I am a caring busy body. The symptoms she described horrified me, I'd never guessed. She told me about the sleep loss, a hug that left her in agony for hours, legs and arms taking on a life of their own. She also told me about her inability to remember things and forgetting words she would have normally have used in a sentence. She went on to tell me about a caring rheumatologist that examined her and told her that she had Fibromyalgia. I could hardly believe it when she said that she was happy with the diagnosis, but she was. In her mind she was happy enough that the condition had a name, 'You can fight something that has a name' is exactly what she said to me at the time.

It was what happened after the diagnosis that particularly offended her, and me when I learned of it. Why on earth does the medical profession 'experiment' with people. We're in the UK, which always used to be a model around the world, and we're really dissolutioned by Doctors that prescribe drugs commonly used in epilepsy. She refused to take them because she was scared. Why on earth do they do that, and by the way, tell you its 'all trial and error'. People pay for the error bit!

Sorry that this was quite a long 'hello' but if someone out there wants to defend this situation, I'd love to hear the defence. I'm sure that ther are plenty of 'lab rats' out there that would also like to ask the defense a few questions.

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Comments (7) | Add comment

Karen Lee Richards, Health Guide

3/24/10 8:41pm

Hi Kate,

Welcome to ChronicPainConnection! I commend you for your concern for your sister-in-law. Would that everyone with fibromyalgia had such caring relatives and friends.

I can relate to your sister-in-law's reaction to finding out she had FM. I felt the same way. Although we're not happy about having the illness, it is such a relief to find out it at least has a name. It's scary to feel so bad and not know what is wrong with you – especially if doctors have told you it's just stress or it's all in your head. I agree with her statement completely – You can fight something that has a name.

I can understand why you were both shocked and upset when her doctor wanted to prescribe a drug used for epilepsy. However, there is actually a good deal of science behind that recommendation. It's not unusual for medications to be used for some very diverse conditions.

I think some of the confusion comes from the categories drugs seemed to be classified in. For example, anticonvulsants (which are prescribed for epilepsy) can also be very effective in relieving nerve pain. They prevent seizures by calming the nerves down, but that same calming effect also helps reduce nerve-generated pain impulses. The first medication that was approved here in the U.S. for treating FM was Lyrica (pregabalin), which is an anticonvulsant. Neurontin (gabapentin), another anticonvulsant, has also been shown in clinical trials to be effective for FM pain.

Another classification of medication her doctor may suggest is antidepressants. If he does, he's not suggesting that she is depressed or that her pain is imaginary. Antidepressants can be very effective pain relievers. They work by preventing the breakdown of serotonin in the brain. Without enough serotonin, pain signals can be amplified, which is one of the problems with FM. Antidepressants can also improve sleep, which is usually a big problem for FM patients. The other two medications approved for FM treatment in the U.S. are both antidepressants – Cymbalta (duloxetine) and Savella (milnacipran).

When your sister-in-law's doctor told her treating FM was a matter of trial and error, he didn't mean that he was using her as a lab experiment. The fact is, there is no single treatment that has been found to help every FM patient. Most medications seem to help about 30% - 40% of people with FM. So, unfortunately, for each individual patient, it is generally a matter of trying different medications until they find the one that helps them. I wish there were a better way, but I'm afraid that's where we are right now.

In addition to the specific medications I mentioned, there are a number of other medications that may be used "unofficially" or off-label to treat FM as well. Personally, I've been using tramadol for a number of years and it helps me quite a bit. Here is a link to an article about different meds used for FM that may be helpful: Medications Prescribed for Fibromyalgia

I hope this helps you and your sister-in-law feel a little better about her doctor and his recommendations. I would just encourage her to learn everything she can about fibromyalgia from reputable sources. Our best weapons against this illness are education and knowledge. We have a lot of information here to get her started: Fibromyalgia

And I hope both of you will feel free to ask quesitons any time. We'll do our best to help you. – Karen

Kate

3/25/10 2:39pm

Hi Karen

and thank you for taking the time to put together such a helpful post. There were 2 replies and I'm afraid I answered them in reverse order.

I do know about Tramadol and also Nefopam (?). I've been looking at lots of stuff on the internet to see if there's any other approach than what appears to be fairly heavy duty drugs. I asked Angelaamy, my second poster, if she had found anything that she had done for herself that's helped. Have you?

Kate or Kath (people use both)

angelaamy

3/25/10 7:18am

Hi Kate, I too found it a great relief to be told I have fibromyalgia.I was 48yo, have had chronic pain all my life. hearing 'its all in your head' so much I honestly believed I must be mentally ill if my own head was causing the horrific pain. Learning I had a real, physical disease and am not crazy was wonderful! Didn't realize how big that fear and doubt of my own sanity was until it was relieved.

how lucky your sister in law is to have you- so many of us deal with family and friends who just don't understand (or try to) how difficult it is to hurt all the time, and all the other problems of fibro.

I'm on an anti depressant along with pain medication, it helps tremendously.

Kate

3/25/10 2:25pm

hi Angelaamy

I think it's the invisible nature of FM that gets me more than anything else. I've given her the address of this forum and hope she'll join in. Is there anything that you've changed for yourself that helps?

Kath

angelaamy

3/25/10 9:08pm

doing everything slower and one thing at a time is the biggest change. used to be a typical type A - juggle several tasks at the same time and stay with it till everything done - now I pace myself and no pushing. frustrating to vacuume, mow, wash dishes, etc. in bits when I want to just get it done but .......

now that arthritis is bad too have learned to vacuume sitting on a rolling office chair, sit at the table to chop veggies, make sandwiches, etc. instead of standing at the sink or counter, wash a few dishes at a time instead of a whole sink full.

3/27/10 12:09am

I just read an article in a Reader's Digest about a man that was on 21 different medications for various problems. He owned a dry cleaning service and began having difficulties remembering customers that he had had for years, among other things. Luckily one of his customers was a pharmacologist who knew that several medications can affect your memory. Some of the medications the man was taking were to treat some of the side effects caused by some of the other medications he was taking! The pharmacologist was able to reduce his meds to 6. Some meds were switched to other meds which were used for the same thing but didn't have side effects as the ones the man was on. After that the man's mind/memoy was back to being normal and clear and he resumed interacting with his customers and calling them by their names as he had always done in the past.

So make sure you consider the potential that possibly one or more of your meds may be affecting your memory. And ask your pharmacist for the drug insert that comes with each of your medications so you can read it for yourself. Pharmacists can't remember all the possible side effects of a drug so it's best to ask for the insert versus just asking the pharmacist. (I'm in the medical profession).

Also your doctor/doctors might not believe your forgetfulness could be secondary to a medication. In the above article, the pharmacologist submitted a lengthy written report about the man's medications and his recommendations regarding what medications the man should be on. The doctor didn't agree and wasn't willing to change the meds. So the man found another doctor who was willing to work with him.

I don't know anything about fibromyalgia so I'm not saying that your memory problem isn't secondary to that. But I just wanted to make you aware of such problems that can occur from certain medications. And if your memory problem could be associated with your fibromyalgia, I suspect medications that might affect one's memory possibly might make your problem worse. Again you have to do more research asking doctors, pharmacists, etc.

I wish you luck!

delanolady

4/24/10 11:30pm

I understand your sister's feelings. You now know her symptoms. Wouldn't you be terrified if you didn't know what you had? How would you feel if your doctor thought you were just a drug seeker or someone who just made up symptoms? It took three years for my diagnosis and only because my doctor had only been out of medical school for a few years. Also, for treatment. In the United States, the two most promising drugs lately have been Lyrica and Cymbalta. Please let me know how your sister is doing.

Is it just me, or is the Medical profession just stumbling in the dark?

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