My doctor doesn't know what else to do...

[haoch]

Hi!

I'm new here, so I'll try not to ramble on...and on...  8^)

I have unidentifiable chronic pain in my right breast, across my ribs under the breast and a strange "rash" on my breast (the rash is not on the surface). The pain has lasted 8 years and the rash lasted for the first 5 years.

I've been bouncing back and forth between Percocet and Vicodin for many years. My doctor has tried everything (I've seen 24 doctors) and doesn't know what to do for me. So she wants to wean me off of the Vicodin...but there's no backup plan. The pain drops me to the floor at least 4 times a week and the aching, stabbing pain happens daily. I'm taking Gabapentin, but it doesn't cut through the pain.

What am I going to do? Quite frankly, I'm scared out of my mind. I can't "just live with it". I'm not sleeping or eating well, my anxiety and agoraphobia are through the roof, not to mention my depression.

Thank you for any feedback you may have!

[Tuckamore]

I'm glad you have found the courage to continue your search. We are here to listen and support.

Many of us have family members that don't understand. Sometimes I think they just can't understand. They have never been in our shoes. And would you have beleived someone else in your/our position if you were healthy, active and pain free? I think it is difficult until you have been there.

Compassion goes both ways and I have compassion for their ignorance.

[haoch]

Thank you for both of your messages bastet56!!

I'm not going to give up now. The people who are contacting me are helping me to remember what my life was like before I got so sick and started isolating. I miss people! I was laid off my job of 14 years last year. So, I'm now doc hunting as well as job hunting! I'm doing temp work in the meantime and that's working out well for me.

Oh...about your cancer question...that's the first thing my doc thought I had...innflammatory breast cancer. While the rash was still present I had 2 core biopsies and a skin biopsy done. Nothing. I'm happy to be able to say that. I know others aren't as fortunate. Still, I'm going to get to the bottom of this if I have to fly to the moon!

Thank you again! I truly appreciate your thoughts!

Warm regards,

Holly  

[haoch]

Hi Mollyrae - Fellow Catlover!

What you have given me is more than I ever expected...you've given me an understanding shoulder. And I feel as though I have a voice now. One that's being heard. WOW!!!  8^)

I don't know what I'd do without my gang. I use the term gang literally. About 3 years ago I went a little "cat happy". I love the rescue kitties and already had 6. Well, I moved that number up to 11! I lost Spock 2 years ago, so now there's only the 10...ranging in ages from 3 to 18. It's never dull around here! They've been my support system. They don't say much (except Bobbee), but boy do they listen!

Thank you so much, Mollyrae! I look forward to talking with you again.

Warm regards,

Holly

[bastet56]

Have they tested you for breast cancer? There are 2 types, the tumor kind and the kind that looks like a rash.

[bastet56]

You need to keep searching for a good pain management dr. There are hacks everywhere. If you come to Reno, tell me and I will give you the name of ours who is great! You have to have a referral tho as always. Don't give up. The pain is very real and very helpable.
                            Good Luck

[Mollyrae]

Hi Hoach:

There is nothing worse in this world when dealing with Chronic Pain than a loved one or Family members not standing behind you. It is hard when you cannot confide in the ones that mean the most.

We support you with open arms because most of us are in your shoes. Many of the members have a diagnosis but some of us don't have a clear picture of what is making us sick and have to pray that some Doctor out there will have the golden answer. I too have Chronic Pain and has a Husband who understands to some degree but not completely. I found this community about a year ago and it has been a godsend for me. Members in this community have seen my good side and not so good side but still, I can come here and release some of me frustrations.

I have found many, many friends here with tons of support to give me. So if you are ever feeling like you need someone to talk to or just need to vent...this is the place.

What is nice about this particular forum is that you will start to find others who are suffering from the same pain that you are suffering with and like they say, sometimes two heads are better than one. I'm not saying that you can diagnose yourself but added information is always helpful for both you and the Doctor.

I see that you are a Cat lover too! I am passionate about my two cats and would have more of them if my Husband would let me. Maybe it's good that he won't....I think we would have many.

I'm sorry that I don't have any further advise that might help you with your pain. I do hope that I have helped with the Heart.

Please take care and explore that community...You might enjoy it.

Mollyrae

[haoch]

Hi Tuck!

Thank you so very much for your response!

Excellent suggestions! I do live rather close to a university medical school. I'll call them tomorrow to see if they can help with a diagnosis. Great! I have not seen a hematologist...I'll research that as well. During my research, I found many who benefitted from Lidoderm patches. I called my doc and she said OK. It's a band-aid, I know, but I'm hoping it helps while I find someone to help me. I'm also going to talk to my doc about the pain meds. Right now, I don't see any need to stop them until I've found an additional doctor.

What an amazing community! I'm so gratedul! My family doesn't support me at all. My brother calls me a liar and a loser. My Mom could care less. But I feel absolutely driven to find someone to help me! I'll not stop now! How does the saying go..."Don't give up 5 minutes before the miracle!"

Thank you, Tuck!

Warm regards,

Holly

[Tuckamore]

Hi Holly,

Welcome to the Pain Management Community. I am glad that you found us. I'm sorry to hear about your chronic pain.

I assume they have ruled out complications following a case of Shingles.Some ppl can develop postherpetic neuralgia following Shingles, in which the localized pain can remain years even after the rash is gone. Neuralgia is extremely painful.

My pain(s) are located in a different area but I went through something very similar. Finally I stumbled across a physician that not only beleived me but was able to diagnosis the cause of my pain. Prior to her I was called every name in the medical dictionary was given untrue "labels."

I don't know if you have a choice being weaned off your pain meds but if you do I would not go through that just to please your physician. I know you have seen many Doc's but I would continue searching until you find someone that believes your pain and will treat you.

Anesthesiologists are normally part of a PM Clinic. They perform procedures such as ESI's to treat your pain. I recently saw one that was connected with a large PM Clinic and Medical Center.

Have you seen a hematologist? Have you been to a clinic that is connected with a large university teaching hospital? Your condition has just not been diagnosed. Don't give up. I did and now have irreversible damage that could have been avoided had I been beleived and treated.

Narcotics can change your personality to a degree but more so chronic pain (CP) can change you in so many ways. So it can be hard to determine if it's the narcotics or the CP or more probable the combination of the two.

We are here to support you even if that means to just chat and vent. feel free to send me a PM any time. And please let us know how you are doing. I'll look forward to your updates.

Take Care,
Tuck

[haoch]

Hi Sharon!

Well, bless your heart!! You've helped already. To be believed is the greatest gift of all!

An anesthesiologist? Great idea! I'll do my research and I know I'll locate a compassionate doctor. Yes, I've seen pain specialists. One said that "pain is all in the mind, dear" as she patted my leg. And the other accused me of being a junkie and told me not to come back. Nice. I will go with my doctor's advice to get off of the Vicodin. A friend mentioned recently that I'm not the same person I was before the Vicodin. Yep, it's time.

I've been researching pain centers (not in my area) and I believe I've found a doctor who will help me. He's a psychiatrist as well as an MD. But I'm still going to research anesthesiologists! I agree...the most important thing for me to focus on right now is getting a diagnosis!

Thank you so much, Sharon! You have helped lift my spirits and give me the drive to keep researching, so I can continue to be proactive with my own health!

Warm regards,

Holly

P.S. And if you ever need to talk...I'm right here!  8^)  

[Sharon11353]

I appreciate your anxiety at being left without any pain medication after depending on it for so long. I recently faced the same dilemma when my pain doc suddenly announced he would not refill my morphine that I take for severe bone pain. He was discharging me as a patient because I had had to be admitted to the hospital after I fell and hit my head. I admit he and I did not have a good relationship and I returned to my Family Practitioner and she kept me going until another pain person agreed to take me on.

What I am saying is you need one doctor you can trust. If your doc feels you need to wean off the narcotics and they fully understand you and your medical history trust them and give it a try, Then if you've tried it their way and couldn't tolerate it they will have to find a way to deal with your pain. Have you been to a large medical center for diagnosis?  Have you been treated for the pain by a pain specialist? They are usually anesthesiologist and know more about drugs then any other doctor.

I really do understand your feelings and unfortunately the medical community will see you as in need of psychiatric help because they have not been able to fix you. I have been there myself. What got me through it was someone believing in me. Keep your chin up. Take a deep breath, try it their way but insist on a diagnosis. I am sure you are not crazy but you have some things going on that need to be treated. Find the right antidepressant, work on your anxiety and insomnia and do not let your agoraphobia grab hold. You are ill and need the proper medication and help.

Let me know if I can help with any kind of help such as getting the right kind of help or something. Keep the faith.

Sharon