The Dark Days

By Duke of Southern Friday, April 09, 2010

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Just wanted to send my first quick overview about my sitiuation. Hope to share with others. I have had fibromyalgia for almost 1.5 years.

Truly diagnosed recently but other doctors have thrown the word around to me for a while. Starting following Teitelbaums book from Fatigue to Fantastic about 3 months ago. Gaining weight, have more energy, sleeping somewhat better, working out mildly but still severe pain in upper back, shoulders, neck, headaches and chest. almost always upper back and neck area. I have never felt anything like it. Went to the emergency room a couple of days ago it was so sever. I have never taken pain meds in my whole life until now. My first doctor would not prescribe them and she watched me slide right off the radar until I lost my job, and everything else. I was forced to get another primary doctor who is holistic, (very hard to find) and a pain dr as well as a psych. for psych. meds. The pain has gotton so bad that I have wondered about life itself. I take 4 Norco (10/325 Hydrocodone) a day. Usually 2 at a time to keep in the 6 to 7 range but on bad days it is not doing a whole lot. I'm doing mild exercise, stretching, massages, hot detox baths, helps a little but to be honest I have never gotten ahead of the pain. My pain dr doesn't really believe in fibromyalgia.

How can I get him to not be so afraid of me and the pain meds? It has been the only thing that has helped up until now (it truly saved me that is how bad I hurt without it.) Any suggestions with working with dr.s (what angle to approach him) and any particular med suggestions would be helpful. I hear the patches like Fentanyl work well, less mentally addictive and that Oxycontin works well when needed. What about online dr.s and Pharmacists? Just want to want to live again and this constant and severe pain is sucking it out of me. Have 2 children and a wife and I want to spend time with them without being a bear or moaning and groaning. Please help

Comments (6) | Add comment

mollyj

4/11/10 1:42pm

Hi there,

You sound like me, there is no ending to this pain. I have been on pain meds for 25-30 years or more. Just last week I saw my rhuemy and he gave me Cymbalta instead of neurontin, By golly, it is working. My pain level has dropped to about a 6-7 from 9. I am happy with that. I also take Lortab for pain, and have 20 other drugs I take for various things. I would suggest you talk to your dr. and ask to try something else. There are many drugs out there, and every one's body is different. I always go in with a list of what's going on with me, I forget otherwise. I don't let him out the door until I have all my questions answered.

Duke of Southern

4/12/10 6:30pm

Thank you Molly.

Cymbalta has helped me in the past, before the Fibro was "officially" reported. In fact it was the only antidepresent that has ever helped. I am learning a lot in a short time. It looks like I will be trying to get disability which sounds like a nightmare. One day at a time. I just want a dr to listen.

I have take hydrocodone for several months now but it appears I am getting worse or my body is getting too used to the med. Do you need to change or rotate pain meds (opiates) every few months to keep them effective?

Thanks Molly,

Duke

mollyj

4/12/10 8:02pm

Hi there, Well everyone's body is different, I have been on Lortab for quite a long time. I have been told by my rheumy that I can get to where It can't be increased and I will need another stronger drug. The tolerance thing that I do believe everyone hits , sooner or later.

It's a mad merry-go-round when there is so much going on in my body at the same time. I have several diseases to contend with, RA, OA, diabetes, Sjogren's, Restless Legs a couple more. It's to balance all of them. My rheumy said if this doesn't work he wil try me on Rituxan, or some new drug that has just come out lately. I also have a liver and heart condition that scares everyone also. These drugs are hard on the body.

4/15/10 10:30am

First if your doctor is not willing to prescribe the medication that you need you must find a different doctor. You need someone who will work with you and listens to you.

I take a combination of Percocet and Fentanyl patch.

It helps to keep the pain level tolerable.

Of course everyday has its triggers ... the weather, stress, physical exertion, etc.

I was put on Cymbalta a couple of years ago and it was hell for me.

My bp skyrocketed, I had panic attacks (I'd never had one before), it affected my appetite, although at first it helped with the depression aspect of the disease after time with all of the side effects I had to get off of it. At first my doctors told me it wasn't the cymbalta. It was just normal aging. They wanted to start prescribing bp meds and potassium. I decided I wanted to get off the cymbalta.

It took over a year to get back to a somewhat normal place again.

It's important that you pay attention to what you feel and know if the medications are having an adverse affect.

good luck.

Mama Coop

4/15/10 3:24pm

What kills me is I asked my PCD to go see a specialist re: Fibromyalgia and he says, they won't see you unless you have blood tests that show something is abnormal, so he does all the arthirities tests on me and they are all negative so he is done with me. Don't I have a right to see who I want to see and isn't one of the biggest signs of Fibromyalgia is that nothing weird shows up in blood tests but we have excessive pain? I feel like I'm going out of my mind and my PCD doesn't give a hoot about me. I live in an area with not too many primary care doctors so it's not like I can find another doctor.

Einnah

4/16/10 10:19am

I am 33 years old, this all started about 6 years ago. I was at home and something happened to my back, I could not walk for 5-6 weeks, from that point things went very wrong! I had a back surgery that did not help, the doctor said a morphine pump was my only option. I said no, I have two kids and a husband to take care of. I found another Dr. had another back surgery (lumbar fusion) but the pain did not stop. I went to a pain management Dr., shrink and everything trying to fix the problem. The pain management dr put me on Lyrica, which does help when my bones feel like lava, but 750 mg is way to much!!! I'm now on Celebrex 200mg 2X's a day, Lyrica 150mg 2X'x a day and vicoden, I only take half a pill at a time, I am so worried I'll become hooked on it. The pain still stays at a high level but I've tried to learn to deal with it. It quickly breaks me down mentally! I have just moved 3 states away from my PCF, which just gave me a shot in my R elbow three weeks ago, it is not working. What do you do? I get tired of people saying Fibromyalgia is not real (my shrink told me it was all in your head), so this is what I have spent 2 years trying to tell myself! I am one of those people that will not beg a Dr. for pain meds! I just get to the point anymore that I don't know what to do! It sucks being this young having this, it's like my life has been taken from me before it really even got started! I am constantly getting cortizone shots in joints, why? Why will the Dr. give you a cortizone shot if nothing is wrong with you, but not want to give pain meds. I thank my Dr. for giving me the Celebrex, Lyrica without them I would be in very bad shape, and the vicoden although I scared to death to become addicted to I take when I have the bad flair-ups, which seems to be more and more often. Right now I cannot even bring my R arm to my face without crippling pain, WHY? Could someone with Fibromyalgia PLEASE help me to better understand what is going on with my body?

The Dark Days

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