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Hello - I'm new. Wanted to reach out to people who understand.

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Fibromyalgia
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Posted 11/22/2013 4:47 PM (GMT 0)
Well. Honestly I haven't had internet for five years - I was on these forums back when I first was diagnosed.

I was diagnosed in my early 20's.  I was experiencing an array of symptoms and having no support at home I believed my doctors understood what was going on. I was niave.

I didn't understand that doctors could prescribe medication with the "hope" that it would alleviate symptoms and that the medications they were trying me on would have side effects. I've taken gabapentin, lyrica, Effexor, amitriptyline and took Ativan for panic attacks.

My anxiety stemmed from my health drastically deteriorating. There were times where I couldn't get up my stairs. I was scared and confused at what was happening to me. I had symptoms when I was a kid, but after a very stressful experience it flared up.

My doctor told me that the western medical system was not designed for people with my condition and that there were some things in life worse than death, and I had it. - he was frustrated that he couldn't just "cure" me. I haven't seen a doctor since and went off all my medication. (I could blab on about ignorant doctors - the medical system on the islands I live on have a high turn-over rate)

I haven't taken any medication for 3 years now - except Cannabis (which I'm ashamed of, since its not necessarily legal) which I find has its own side-effects, but the side-effects are less than the medication I was on before - I couple it with an honest attempt at regular exercise. I've found, the more muscle mass I have the less symptoms I have. I still have my bad days - and the pain doesn't really go away.

The way I explain it to people is that I can compartmentalize the pain most of the time, but if I add stress or I'm over tired, I can no longer mentally cope with the pain and the pain consumes me. I hate that I'm not comfortable talking about my condition to my peers. In all appearances, besides only working part time, people would never guess I suffer from it.

Are there any other fibro-sufferers who have been able to not take meds? I'm really curious if I am causing myself a detriment, maybe my quality of life would be better if I found the right combination. I know I should be seeing a doctor, but my experiences with them were poor.

Anyways. Thanks for reading.

 

Posted 11/22/2013 5:10 PM (GMT 0)
There are far too many variables, for each person, to be able to predict what can work and what doesn't.

Here are my thoughts.

I chose, early on, to use drugs judiciously, in order to be able to try to preserve my quality of life. This was important to me. I managed to continue on with my career for almost a decade, and had to make some changes within the last year, largely due to other worsening conditions. But, as we all know, if something else is wrong, fibro is worse.

Some I do not wish to try (lyrica, humira) while others I have tried and discontinued (cymbalta, zoloft). But, I have been on medication since first diagnosed, almost a decade ago.

I also have other health concerns and am on certain pills for life or remission, so perhaps the stigma so many associate with prescription medication had already been broken for me.

Currently, I take painkillers, a sleep med, and (most importantly for me) a muscle relaxer. Restorative sleep is far and away the most beneficial medicine in my arsenal.

Regular exercise is a must for me. When I don't move, I get far stiffer and the pain is worse.

I understand your concern about doctors, however, avoiding them isn't really healthy either. They are human, just like us, and make mistakes. But they need our proper input to be able to help us. I read a book called How Doctors Think by Jerome Groopman, and it was great at explaining how doctors arrive at their conclusions, and what we as patients can do or not do to help them.

My best experience was at a teaching hospital, which had an out-patient rheumatology clinic. Check into one at your area. I have found (my personal experience) that PCPs aren't very helpful, and many rheumies in private practice are more used to arthritis.
Posted 11/22/2013 8:28 PM (GMT 0)
Hi, Seaweedgrass, and welcome!  I'm one that takes very little prescription medication for fibromyalgia.  I just didn't want to talk Lyrica, Savella, or Cymbalta...the main medications used today.  I have had fibro for 26 years...but who's counting.  tongue    When I was diagnosed I was put on ibuprofen with food and Tylenol.  That's all I took for quite a few years.  Then I found out about magnesium malate and vitamin D3, which many are deficient in.  I started taking these two things and started improving in the pain and fatigue department. 

 

A couple of years ago I started getting worse.  Fibro isn't a progressive illness so that sent me to a board certified rheumatologist and I was diagnosed with another problem along with fibro.  He put me on a muscle relaxer...Robaxin...which has helped me significantly.  Even to the point that I'm not needing as much ibuprofen and Tylenol now plus I'm sleeping much better.  Before the muscle relaxer, I would wake up 3-5 times a night because of pain.  Now I wake up once a night to use the bathroom.  Big difference for me!  Because I'm sleeping better, my pain is better, also.

 

Gentle exercise is highly suggested by doctors for this illness and I'm glad you have discovered the benefits of exercise.  You just don't want to overdo because that will give you more pain.  I walk and swim as my form of gentle exercise plus I do stretching exercises and then I take care of my own home, garden, etc. and all of that is exercise, also.  I also pace myself when doing things and that helps a lot too.  I'm having 14 people here for Thanksgiving and I started getting ready for company three weeks ago.  This way, everything gets done in a timely fashion and I'm not exhausted either.

 

Be sure to read Fibro 101...the first thread on the forum.  There are links to good info about fibro and you will learn a lot there.  I'm still learning new things.  There are links about the vitamin and supplement I mentioned above and how they work in the body also. 

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you soon.

 

Sherrine

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