Fibromyalgia

[EweSheep]

Quote:
Every one of them needs a doctor's referral. I can not just go in and get an appt without one. Yeah, stupid isnt it? Even I would pay for the visit out of my own pocket to see if I had any thing to do with fibromyalgia. And many of them closed their books on folks on Medicare because my state is so slow about paying for the services.

 

[conroy]

I didnt read all the replies but what about chelation? It might help.

 

[spook]

A referral is matter of fact, you ask for it, you go. Fibro has become a common health concern that needs attention. Rheumatologists - er at least mine, is very empathetic, pro active and explains things out. Some say I'm fortunate, but if the doctor doesn't help you, then he needs to be fired.
We place these medical professionals on some pedestal and you know what, they work for us, my doc is employed by me. If I pay someone, and they want to Screw off and tell me its all in my head, then he needs to be someone else's doctor.
You keep a pro active outlook on your health. You may still have pain after the first few treatments, but you have to keep plugging away.
Offer to let your doctor go if he isn't doing his job.

 

[Jena]

Thank you Spook.

Hope you are doing ok,

I also feel that the snow is better than rain, also have difficulty with cold and damp.

Thanks fo your advice.

I am not familiar with the drugs over there, so I look them up, all information is useful.

Hopefully the warm weather will be with us all soon and we can look forward to a mice warm summer that helps with some of the conditions we have.

Thanks again,

Jena.

 

[AmyJ]

Hi! I just saw this thread. I started having the pain ,fatigue etc a few months after my daughter was born. It took almost 2 years and finally was diagnosed with Fibro. Its been almost 5 years since since I started having symptoms. My Rheumotologist has me taking malic acid and magnesium and flexeril (muscle relaxer)at night. I have my good days and bad, but am doing so much better. These things seem to be working for me, at least.

 

[curliet]

This thread is very interesting and full of food for thought. I'm amazed at the amount of medication being taken by all of us, both prescribed by our drs or suggested by friends and relatives.

My story is similiar to that of most of the rest of you. In 1999 I was seeing a GP, a young man who was fairly new in the practice of medicine. I began to try to explain all my symptoms, the sleep deprivation, the numbness in hands and feet, the pain in my arms, legs, neck, shoulders, feet, everywhere. I told him about the problems with my bladder and bowels. I especially told him about how frightened I was that I got so confused so often, and he just laughed it off. I can't even remember all the problems that I took to him. First he said he could find nothing wrong with me and suggested that I should be on HRT. When I resisted that, he was actually angry with me, and then kind of disdainful. After I continued to take my complaints to him, he called me a "chronic complainer" and said that I was a hypochondriac, and really demeaned me. Since I had so many problems with no apparent cause, I began to think that I was mentally ill, or at the very least had Alzhimer's Disease. I begged him to run some tests or something to try to find what was going on. So, he sent me for some tests, and then called me to say that all signs were that I had Lupus and he was very sorry. I had already left my job, because I couldn't deal with all the responsibilities of it, so at least I didn't have to break that news to them. Decided to wait for a while to tell my family.

In the meantime I had been hearing about FM, reading in some magazines, and seeing on a few talk shows. So back to my dr. He laughed and declared that FM is a "fake disease" that people who are trying to get out of having to work have made up. Then I was just furious. An article that I had read had said that you need to see a rheumatologist, so I asked for a referral. My GP reluctantly gave me one. Voila!!! The new dr did diagnose me with FM. This was in 2001. However, he also diagnosed Lupus, arthritis, and a few other minor maladies. He said to me "you will not die from Fibromyalgia, but you will die with it. There is no cure or remedy." He suggested some very good books, written by medical professionals. But no one then had any idea what to do about stopping the pain. Prozac was the first thing I was given, along with Elavil, and Vioxx.
It was also mentioned that a support group would be one of the best things I could do. And that turned out to be right, I was suddenly in a room with about 30 people who all knew about fibrofog, running to the bathroom, having your arms hurt in the morning and your legs hurt in the afternoon. Astounding! And so validating!! At that point I fired my dr, the GP who had treated me like an idiot. I recommend a support group very strongly. And here we have one starting right at our fingertips.

Since that time my medications have changed so many times I can't remember. Right now I'm taking the Lyrica for the FM. I haven't decided yet how I feel about it, it scares me some. The side effects
bother me a lot. It was originally developed as a treatment for seizures and interrupts signals to the brain. It also seems to be addictive, and I already notice problems if I forget to take it for a day. It supposedly keeps your brain from recognising a pain signal, but if that's the case, why would I still have arthritis pain and other types of pain? So, I'm still taking Mobic for the arthritis. And, for the breakthrough pain I'm taking arthritis strength Tylenol. That rheumetologist that diagnosed my FM told me "With antidepressant medications you'll still have pain, but you won't care." I feel that the same thing is happening with the Lyrica.

We with FM have a lot on our plates, and the FM always seems to bring other problems with it when it comes. All kinds of auto-immune problems. Hopefully someone will come up with a solution to this crap, and in the meantime I'll keep looking to you to see what you are using that works.

 

[rooster0209]

I was recently diagnoses with Fibro and I have been on depression meds for a few years now (Effexor XR). I tried the Cymbalta but didnt get the Rx refilled. Personally, I didnt feel much of an improvement and $75 after insurance was too much.

I take amitryptaline at night to help me sleep ($8 for 30). A good nights rest, for me anyway, seems to be the best help. I also use a hotwax treatment on my hands. that is just wonderful. Ibuprofen, or Aleve with a nice glass of wine helps with the pain too. I have also found that the hot tub can be truly wonderful.

Sometimes I use a buckwheat filled neck pillow and that helps with the neck and shoulder pain. Another thing I found that was good for general over all feeling, is less stress. If you can find a way to relieve some of your stress, it sure makes you feel much better. Also, when you have a good day, don't over do it. The hardest part for me was realizing my limits and keeping within those limits. I still think I am young

somtimes and my body reminds me that I am not

Good luck in finding the right treatment for you. Sometimes it can be a long process and getting a good physician that listens to you is very important.

 

[rooster0209]

Quote:
If you cannot get a referral, check for a new doctor that specializes in geriatric care. I am only 40 (not old) the doctor that I see is not an RA specialist, but geriatrics is her special field. She really seems to undestand and work with me. ....just an idea

 

[antiquebuff]

I have had this for 10 years now and have been on complete disability for 2 years now. My specialist explains they are taught , there is no such thing, but the condition is there , so they gave it the name , but it is caused by another condition that they can not explain! Maybe some day!
I wish you the best!

 

[Jena]

Thank you all so much.

It has been so useful to read all of your posts.

I am due to see a pain management consultant in 2 weeks, and I am hoping for some improvement.

The tablets I have been taking are helpful for the pain at night, Zapain are a codeine phosphate/ paracetamol, but the doctor has advised me to use ibuprofen as well to deal with inflammation.

I have spent the last 2 nights in tears due to chronic pain in my elbows,and wrists, that have led to cushions propping me up to prevent my hands touching the bed. Even my sons think I am wierd inthat my pain moves about, but slowly they are coming to understand I hope.

They have offered me ampitriptelene as well but I am trying to manage with my anti depressant Dosulepin, that is meant to counteract anxiety/depression. So it does help with relaxation and sleep.

i am really pleased to read your thoughts on alternate methods for wellbeing. I will continue with my vitamins, and thank you all so much for discussing this topic.

I am finding it all very difficult especially with the arthritis in my neck, I have learned fromthis threadthat this is not wierd, or unusual, or all in the mind, as they seem to suggest. The UK is so far behind the US in dealing wih Fibromyalgia, but I see that many of you are still facing the same problems we have here.

Best wishes to you all,

Jena.