March 27, 2008 - 12:53pm
Hi, I am new to the site. I have read a lot of posts and I think this is a great site and a great help to people who otherwise might not have another source of help/advice.
My issues are with chronic pain that really has no diagnosis. I have been to several specialists and have been diagnosed with probable Lupus and probable fibromyalgia but no solid diagnosis. I have severe joint pain in all my joints as well as pain in my left hip with a dull ache and sometimes sharp pain that radiates into my leg. Sometimes I hurt so bad I cannot even get into the floor to play with my two boys.The specialists have put me on Gabapentin and Prednisone, which do not seem to help. My primary doctor has had me on 7.5 mg hydrocodone for the past year. My initial dose was one every 4 hours but now it's been increased to two every 4 to 6 hours but I am only getting minimal relief from it. It seems the more he increases within a few weeks the less effective it is. He does not want to prescribe me anything stronger as he says I am young and he worries about addiction and tolerance issues. My rheumatologist does not want me on narcotics at all however we have tried the non narcotics such as Etodolac and Naproxen with no relief. Of course my primary doc says I have to have relief with some type of narcotic thus the reason for the hydrocodone.
My issues are that I do not understand why I cannot get a definitive diagnosis.
I am seeing a specialist who I was referred to due to his success in diagnosing very complex cases. The diseases that I have a probable diagnoses for all deal with chronic pain for which I definitely have many times over. He wants is dealt with using no narcotics at all but the meds he has me on are not working and the steroids have nasty side effects. On the other hand my PCP does not agree with the non narcotic treatment and has me on hydrocodone but its not as effective as it once was. I am wondering if I already have a tolerance to it..
Can any one give me some advice on how to get a doctor that can give me some clear answers on what I have and a treatment whether it be non narcotic or narcotic or include both, that will actually help me?
March 27, 2008 - 1:31pm
#2
Narcotics are indicated
Narcotics are indicated for the treatment of mild, moderate, moderately-severe or severe pain. Pain is a symptom of Fibromyalgia isnt it? As far as I know Lyrica is the only medication that is indicated for the treatment of Fibromyalgia, but that doesnt stop docotrs from prescribing all kinds of NSAID's,SSRI's, atypical anti-depressants, and other medications for neuropathetic pain.
I guess what Im getting at, is that Narcotics are indicated for treating the symptoms of Fibromyalgia, right? But not for the disease itself?
March 27, 2008 - 3:23pm
#3
I feel as though I have not
I feel as though I have not received a difinitive diagnosis because I have not been given a true 100% diagnosis of Lupus or Fibromyalgia. My rheumatologist gave me a diagnosis of probable Lupus due to all of my symptoms and my past history with miscarriages. He has run blood tests but cannot find any thing that points 100% to Lupus. I have asked about the biologic treatments as well as other forms of treatment of Lupus. My response was if I cannot get a clear diagnosis of Lupus and Fibromyalgia then he does not want to put me on these medications as some of the side effects are much worse than with the steroids. The steroids and Neurontin are the only medications that he is willing to try at this point. After 6 months on them I think I should be seeing results if they were going to work. I am not asking for a cure, I am asking for help from a specialist who says I may have certain conditions but cannot tell me for sure. Since he cannot give me a difinitive diagnosis he is only willing to give me partial treatment.
This has been going on since the birth of my first child 3 years ago and I have been trying to find something or someone that can help me since then. I am not asking for a miracle cure here. Just help.
March 27, 2008 - 6:01pm
#4
I think this is the truth I swear/
Doctors probably want you to get your stomach torn up from advil and alieve and all this other junk so that it will make the pain in your other areas seem minimal. They'll give you a 12 month supply for you to take it in one month vs them giving you a really effective pain medicine.
March 27, 2008 - 6:06pm
#5
I think that the feeling
I think that the feeling with fibromyalgia is no matter how much narcotic you give someone, they need more, and they do not really get pain relief so much as they get sedation and/or euphoria. The risk of addiction and dependance outweighs the potential benefit. Every source I have ever read warns against using narcotics for fibromyalgia, and the most potent narcotic they seem to recommend in Tramadol. There is also the problem of documenting the existance of fibromyalgia since all the symptoms are entirely subjective. Using narcotics often discourages people from doing the more time consuming and difficult treatments that have been proven to show benefit, such as hydrotherapy and exercise.
March 27, 2008 - 6:09pm
#6
opps, showed up twice
opps, showed up twice
March 27, 2008 - 6:46pm
#7
There are also some people
There are also some people that would use the Narcotics as an adjunct treatment so they would be able to the the excersise that is helpful.There are very few diseases or injuries that medical books list narcotics as an indicated treatment, other than the obvious ones like cancer or conditions that that are life threatening. It all boils down to how compationate your doctor is.
March 27, 2008 - 7:20pm
#8
I would love to be able to
I would love to be able to exercise and go out and pull my 3 year old in the wagon around the neighborhood. As it stands now, I watch my husband doing the things I want to be doing.
As i said earlier, it's so bad sometimes that I cannot get up and down from the floor playing with my boys. As I am posting now, my hip is killing me and as soon as I get up to walk I'll feel like I am a little old lady. I understand that pain medication is not indicated for the treatment of Lupus or Fibro. I know the different medications that can be used for the treatment, my dr. has gone over them with me, but he refuses to treat me with them as he cannot give me a difinitive diagnosis. How in the world am I supposed to be treated then? I just don't know what to do. Start over again with a new Dr.?
March 27, 2008 - 7:26pm
#9
My mom went through three
My mom went through three different doctors until she was diagnosed with fibromyalgia. The first two had no idea how to explain her pain except just normal arhtritis and then she went and seen a speciallist andwas diagnosed with a minor case of fibromyalgia. As Dr. Lois explained it is a hard diagnoses to make as the symptoms usually would lead to think of other conditions. The way I see it is that fibro is just a list of symtops that no one could figure out what they were and just call it fibro.
Why do you find it hard to believe that you cannot get a definitive diagnosis? Even if you have a clear diagnosis, it does not mean that there is any effective treatment. The expectation that doctors know everything or have a treatment for everything (at least a treatment that is acceptable to the patient) is not realistic. Narcotics are not indicated for the treatment of fibromyalgia. Immune modulators including prednisone may be effective for lupus type illnesses.