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Avatar universal

New to the group hoping someone can help me....

I am a 28 yr old female mother of 2 young boys, 2 and 4 yrs old. I have been suffering from severe daily headaches since May of 2008. Recently, the past 4 months I am starting to get joint pain in my hands and knees as well as pain in my back, neck and shoulders. The pain starts out moderately but by mid day I am terribly hurting. I currently go to a Neurologist for the headaches and a rheumatologist for the joint and body pain. My headaches have caused some severe issues with my job and family. Most people think that I can't possibly be in the amount of pain that I am in. I get a lot of well take something or it can't be that bad. I take Trazadone, Zoloft and oxycodone 3/325 every 4 hours. My prescription is for 70 pills every 30 days. If I were able to make my pills last a month I could only take 2 a day which is just not going to happen. I have had so many tests done, CAT,MRI, X Ray, blood work, spinal tap, sleep study. I am not sure what else I need to do... The doctors say diagnostically I do not have Rheumatoid or Lupus but from my symptoms and levels of pain it most likely seems like an auto-immune disorder of some sort. They just don't seem very interested in finding out what the disorder is. They are forever writing scripts for stuff that does not work. Does anyone else have similar symptoms? Or maybe some medication ideas or tests I could bring up at my next visit on Oct 22nd? Any help would be so appreciated since I am pretty much alone and lost in all this.
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1445257 tn?1289276926
Hello, welcome to the board. Do you mean 5/325 Oxycodone? I have never heard of 3/325. But anyway thats a lower dose. It sounds you are seeing the right doctors and getting tested, so the only thing I can think to say is ask if they will go up on the dosage. There's 7.5 and 10 Oxycodone also and you would be taking less often during the day. Have you tried taking any muscle relaxers? Have they mentioned Fibromyalgia?
So sorry to hear of the pain you are in. I know exactly what you mean about others not understanding your pain. Just keep standing up for yourself and keep pushing on till you find an answer.
Helpful - 0
Avatar universal
You are most definetly not alone in being and pain and not being understood!  Most of us here have gotten to the point that we don't talk to friends and most family about our conditions and pain as people without Chronic Pain don't really understand what it's like.
It does sound somewhat like Fibromyalgia but I don't know much about Fibro.  I've heard it's very hard to diagnose and can take years of pain before reaching diagnosis.

May I ask what part of your body they have done the MRI on?  It sounds to me like you could have an issue in your cervical spine that holds the nerves for the upper extremeties, neck, and head.  Like maybe a disc problem or trapped nerve.

It can be hard to get a doctor to take us seriously about CP at a young age.  I'm 28 as well and have been dealing/struggling with CP for 2 years since moving made my "every-now-and-then" pain a constant pain.  It took over a year to finally be taken seriously about the pain I experience and I still have to fight to get a Neurosurgeon to seriously look at surgery.

One thing that may help you would be to get a referral to a Pain Management Provider.  They specialize in treating CP and are knowlegeable about the different types of medications and their side effects, etc.  Sometimes a PMP can also suggest tests or conditions for your other doctors to consider.

Helpful - 0
1271743 tn?1320892461
You are NOT alone... it might seem that way sometimes but there are alot of us out here just like you.  I am not a doctor and do not have any medical training but I know what I know through personal experience and hope my experiences will be able to help you make it to the point in life where your pain is manageable... by reading through your post it sounds like your medication may need to be adjusted. In order for the doctor to understand your pain I believe you have to share a detailed pain journal that you can bring each visit to track your progress.  This will help your doctor determine which medication(s) may work better to manage your pain.  If you want to talk, msg me!  I am here!
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Avatar universal
Thanks Everyone!
I had the MRI done on my head for the headaches from the Neurologist.
The Rheumatologist did an xray on my lower back but that was it. And yes Oxycodone 5/325 sorry about that.I have taken flexeril but it doesn't do anything but make me drowsy. I would like something to help with the pain but I also would like to know what's wrong with me if that makes any sense... I am just so tired of all of this. My kids are so young and 20 out of 30 days I don't want to do anything. It isn't fair to them or me.

JadedSweetheart - Is there somewhere I could search to locate a Pain Management Provider?
Helpful - 0
172023 tn?1334672284
It may be time for a fresh pair of eyes to review your symptoms.  

Any time you don't get a diagnosis, it doesn't hurt to get other opinions.  Sounds like there are diagnoses that haven't been fully explored yet.

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Avatar universal
What type of doctor should I see? A different Neurologist?
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Avatar universal
It definetly helps to have a diagnosis and know what's wrong.  I think we all understand that.  Flexeril made me sleepy at first so I started taking a half at a time, but it does help me.  A nerve medication such as Neurontin or Lyrica may help you in addition to the other meds.  It usually helps to add a med like a nerve med or a muscle relaxer.

One way to find a PMP is to get a referral from one of your other doctors.  The way I have always done it is to go through insurance and find one that takes it.  Or, since I can't find one that takes my insurance here, I did an internet search of pain management doctors in the area.
I hope you are able to be seen and start living your life again.  It's so hard when we have kids that we can't do anything with because of pain.
Helpful - 0
Avatar universal
I am just tired of it all really... I feel like my doctor is just pulling ideas out of a hat at this point. There just has to be another way. I don't want to live on pain medication forever but if it is the only thing that helps then so be it. Pain medication brings on its own issues as well. Doctors accusing me of abusing simply because I ask for an increase in dosage or amount. It is out of hand. Some people really need help, we all aren't out here looking to get high.
Helpful - 0
Avatar universal
I definetly understand being tired of it all.  I think most of us here can understand that.  It may be helpful to see another Neurologist or Rheumatologist.  I would also suggest an MRI of the neck since you have pain there and in your shoulders.
I have 2 herniated discs in my neck and degenerative disc disease, which makes the other discs bulge.  I have one that is pretty much touching my spinal cord and I think that's the one that drives me the most crazy.  The discs cause pain in my neck, base of head, in my shoulders, and down my left arm.  I also have some various arthritis and other -itises.   When the pain gets really bad in my neck, and sometimes even when it doesn't, I get headaches.. as if the pain were spreading up into my head.  I think it has a lot to do with the muscles.
So I said all that to suggest that maybe an MRI of the neck would show what's causing some of your pain.  It may be helpful to have the area where you have back pain MRIed as well.  
Pain medications are a beast of their own.  It's hard as younger people when we have to take pain meds because there are so many out there who are young and abusing meds.  I have learned not to tell a lot of people what's going on with me healthwise because they make assumptions and judgements based on mis-information about pain meds.  I have also decided that I won't see any doctors who make me feel bad because I live with pain every day.  If they don't understand it and won't help me, it's not my job to make them feel better.
Helpful - 0
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