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Old 09-18-2008, 06:07 AM   #1
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can anybody help me, suggestions please.

Ok, I have been dealing with chronic pain since last September, and chronic migraines now for years. For the chronic migraines, I used to take maxalt, vicoden, and ibuprofen. This was for years, and for most times I would take 1/2 or 1 vicoden if it was bad, and then I grew more tolerent, and it would take 2, and this has probably been for 10 years now. Then in September, my tmj flared up, and it has been a year now and it has not stopped. I am in a particually terrible flare up, horrible, barely talk it hurts so bad, and I cannot do anything but think about my pain. I have been on the same medications since last September, valium, and vicoprofen (like vicoden, except it has ibuprofen), and then in February, I moved to Long acting med, o.c. 40 mg 2x daily, it helped some, but I never felt the pain go away, and continued to take vicoprofen for breakthrough. I never felt I responded well to oxycontin,so I asked to decrease to 20 mg o.c. 2x daily, they gave me percocet last September and it did not work as well as hydrocodone for me, but I am in extreme pain and I have been in extreme pain for 4 days now. What do I do? I need more help. I see my facial pain doctor tomorrow, I have to travel 2 hours to see him, but he is not my prescribing pain doctor. I have a pain contract with her.

I need more help, I need some relief, I need a break from this pain. I am unable to take care of my house, and it is not helping my marriage (I am not sure he understands what chronic pain feels like). He is frustrated with our house, and I have 2 small boys to take care of, they are 2 and 5. I stay at home, and really need help.

As I explained my pain management regimine, and my tolerence, should I make an appt to meet my doctor today? Should I call my facial pain doctor, and have him talk to my prescribing doctor? I feel I can not take another day. My face is getting worse, from the condyle being dislocated, discs gone, other condyle almost worn down to nothing, migraines, trigemal neuralgia, myofascial pain, muscle spasms, and fibro. I need help getting through this terrible flare up, can anybody tell me what the right thing to do is? **REMOVE***. Please help. Should I just try and bear it?

Thank you for your time,

Kassandra

Last edited by Mod08; 09-18-2008 at 03:49 PM. Reason: Do not ask for specific medication recommendations - please re-read the posting rules.

 
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Old 09-18-2008, 04:14 PM   #2
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Re: can anybody help me, suggestions please.

Kass-I don't believe you should just try to bear it. It sounds like you are in terrible pain, and I feel you and your doctor should be aggressive in addressing it to give you a better quality of life. I was at that point about a month ago, but then I talked to my doctor, and we worked out a med regimen that is working wonders (for the past few weeks, anyway). This gave me hope that people can improve their pain situation, but they need a doc that is willing to go out on a limb and really be aggressive with treating the pain. You said you can't take another day, and I believe you. I do think you should call your pain doc for an emergency appointment. You may have to just live with it, but you should at least try everything you can. I really hope your doctor is open to considering many options.

What is the plan with your TMJ? I don't know much about it so I don't know what the treatments are. Do you feel like you have a good answer for what is causing your pain now?

 
Old 09-19-2008, 03:51 AM   #3
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Re: can anybody help me, suggestions please.

Kass.
I am so sorry that you are suffering so. Migraine pain is the most terrable pain to have to go through as you are. There was suppose to be an IV or injection form of med (I thought) that would disolve migraines. I was in the hospital years ago with a round of migraines & they would come right back after anything they tried, ironically I have the TMJ to. I took the same med you did & one additional that I cant recall the name of.
I would call your doctor or go to ER if you can. Migraine pain when its at its worse is to much to handle. Perhaps the Osteo ( I think that is who your going to see) can call the prescribing doc. for you. I also took the Imitrex nasel spray, just the nasel spray, no other form of imitrex would help at times.
I hope you get something to soon, I feel so bad for you. god bless, Sammy

 
Old 09-19-2008, 05:26 AM   #4
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Re: can anybody help me, suggestions please.

Thank you all for responding, and helping me. I made it through the day, amazingly,and I called my facial pain doctor, crying, leaving a message for him to call my pcp, and work together on my pain plan. I never heard back. My face is a mess, it is sliding to the right, and 99 % of my severe pain is on the left side of my face. I see my facial pain doctor today, and I hope he has a plan. I am so desperate. I have called him the last past 2 days in the morning upset over the amount of pain I am in. I have been waking up at 4 am in screaming pain, and quivering in pain ( I think that is the best way to explain it) until the medication kicks in. I usually do not go back to sleep and it makes it for a long day with the boys.

With the facial pain, teeth pain, eye pain (migraines, they are always in the left eye) and arm and leg pain from fibro and the darn cold weather, yesterday was a hard day. My migraine came on, I did not have any maxalt left, I tried valium, and then flexeril, for some time now the doctors have been telling me that they are not migraines they are muscle spasms in my face, and head going into my left eye, so to treat them with muscle relaxants. Desperate, I looked everywhere, found a 5 mg maxalt and it did not help too much, then I called my pharmacy and my doctors had called in a refill for 10mg. I came home and took one and went to bed with the boys. All day I needed a dark room, no noises, no lights, and to lay still, I was unable to do that. I asked, begged my husband to come home and help me, but he was too busy working. Instead I wore a disposable eye patch most of the day, my pirate patch too, and periodically kept taking medication to try and calm it down. I believe it is all related to my facial problem. My left side of my face is an issue, and over the last year it has gotten worse. Last September, I was told from a couple of surgeons I needed surgery to look in their and wash it out, try to calm it down, but our insurance does not cover anything to do with tmj. Now the problem is much worse, more damage, every panorex I have had taken has been worse.

2 weeks ago I saw my facial pain doctor, he told me I was not responding to his splint treatment, and it was probaly due to the right condyle being dislocated. He said he does not exactly know how to fix it, but he was going to take my panorex to an orthodontist friend of his to see if braces could fix my dislocated jaw bone. I do not have high hopes for that, and I had braces for 12 years, from 10 to 22. This is so past tmj now, any ideas how I can get more help, and help from insurance. I am ready for surgery yesterday. My being in pain, tired, and sick has damaged my life, especially my marriage, and he is so busy I have to hire a babysitter to help me. I know it is the last thing you might think of when you have been married 8 years, is having a spouse dealing with chronic pain, ( I have been a stay at home mom for over 5 years). I think he has stopped that and understands. I am writing this all because it all adds up. My husband wants his old wife back, specifically the one he married 8 years ago, but I am now a mom to 2 boys, and try to keep the house somewhat picked up. It is always hard. The boys are with me all the time, maybe with their dad a couple of hours a week, and I run the household, and do everything for the boys, no matter how bad I am. I do appreciate my husband very much.

Anyway, I just called my doctor, desperate, and they can see me at 8:45. I am praying they can help me with the pain, until a plan is figured out.

Wish me luck, and thank you for being there.

Kassandra

Last edited by gorgee; 09-19-2008 at 01:53 PM. Reason: needed to fix something

 
Old 09-19-2008, 01:37 PM   #5
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Re: can anybody help me, suggestions please.

Kass, How did it go today ? I too have a hubby who expects me to continue with the household duties PLUS work full time with my pain. The wife obviously is the STRONGER person in a family I think

Have you considered Pain Management ? My PCP was always leary of giving me meds for anything more than 3 months. Now the PM gives me monthly meds, both short acting and long acting. If one doesn't work, they are willing to try another Long Acting. Your pain Doctor then can be your prescribing Dr.
There is Stadol nose spray that I have taken before in the past when I had migraines that worked pretty good after the Fioricet with Codeine stopped being effective.

 
Old 09-19-2008, 02:51 PM   #6
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Re: can anybody help me, suggestions please.

It did not go as planned in some ways. I did not get much help in the pain management department. She was not comfortable with managing my pain today, she still had not talked to my facial pain doctor. I was diagnosed with a sinus infection, and possible pneumonia, with a chest xray asap. She is referring me to a chronic pain group at our local hospital, along with a pain management doctor consultation, that has counseling, massage, and other fellow people going through the same thing. To combat the pain I have now, I am going to try and stay on top of my pain more than ever with what I have and take it easy.

Then I went to my facial pain doctor, ired a babysitter to drive me, and watc the boys ( I cannot drive long distances due to migraines, and he saw a difference in my facial structure/facial assemetry, in 2 weeks it has gotten worse, and my left eye has gotten slower in functioning, and blinking, I am way off. That was noticed last January by a surgeon also, and many other doctors. I would like to have a dollar for how many doctors have asked me if I have been hit in the face, had an accident, or have bells palsy. My face is contuining to slide to the right. He feels that there is something really wrong like a autoimmune disorder, a tumor, or something else. I have major pain, eye migraines, in the left eye everyday. Then he took another set of xrays and he found that my left condyle is even more damaged, it is pointed! The right is still dislocated. He then called my pcp, and explained what is wrong and why I have so much pain. She then said that whatever, if I run out, she will call it in asap, if I run out before my appt next week, and she will refer me to an rheumatologist also, thank goodness for my facial pain doctor. The problems is, she does not have any of my information that my old pcp should have had, she has my records, but nothing from all my specialists to explain why I have chronic pain. My old pcp promised he would write my health insurance, my surgeons to help me get surgery, but he never did. He never helped me with getting referrals. He would say he could treat it himself, and that my stressful life was leading to a lot of my pain (cortisol, adrenal gland, fight or flight). I am trying to meditate, and I truly think it is helping. My facial pain doctor feels the damage to my condyles are too much and after the tests, brain mri, appt to rheumatologist, appt to neurologist, and things are ruled out or found out, then we will move on to getting me to Boston (5 hours away) and get to the best surgeon in New England, and my facial pain doctor can get me in, get the insurance to pay and get me the extensive surgery I need to fix my face. I no longer have tmj, it is so much more than that now. It is a damaged, worn down broken left condyle, and dislocated, flipped right condyle, with no discs, so my left is pointy and bone on bone. No wonder I am in severe pain. Wow, what a day!

In some ways I feel I got somewhere, but in others I did not. I am still in pain, and battling another major eye migraine, that is not responding to treatment. I am going to try and lay low this weekend, and rest with heating pads, and cold packs.

How has your marriages fared with you having illnesses, and chronic pain? I love, adore my husband, and will do anything for him. I want him happy, and he seems so unhappy with me right now. How can I help him? I have never loved a man as I do him, and feel I will never love anybody else. We have had a hard time for a while, and he has told me many times he is done with me, so many times I tried to protect myself by seeing an attorney for information only, not to move on in anyway at that point. I had heard he was done with me so many times, and I was so sick, and in pain, and scared, I needed to know my rights, as I stay at home mother who has not worked in 5 or more years. It was a year ago, and he found out and feels very betrayed. I have apologized for so many things. I do not know what to do. Any advice for marriages with a spouse (me) with chronic pain, stays at home, takes care of 2 boys, they are 2 and 5, has no income of her own, tries her best to take care of the house, has doctors appts, and is scared? I feel like I am to blame, our marriage took a turn for the worse when I started getting sick.

Sorry to blabber, just needed to get it out. Thanks for listening. I hope this is my private place, my place to talk, and get it out. I hope my husband will respect my privacy, and my friends who I chat with.

Thank you all,

Kass

 
Old 09-19-2008, 06:38 PM   #7
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Re: can anybody help me, suggestions please.

I have to ask my hubby and my 15 yr old for help. I am lucky in that my child is older and can help out. I am lucky in that I have a PM Dr. that keeps my pain in check so I can continue to work and stay active. But on my flare up days ( arthritis and DDD ) I just point blank tell them I NEED HELP guys. If there is laundry that needs done, hubby will do the laundry. I finally just started asking for HELP. I know with two young boys you have a lot on your plate. I hope everything works out.

 
Old 09-22-2008, 10:39 AM   #8
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Re: can anybody help me, suggestions please.

Kass,

I just wanted to let you know that I am so sorry you are going through all of this. I remember your situation well and I don't know if you remember what I posted in some of your older threads, both here and on another board, but I still feel the same about your marital situation.

These medical issues and your pain, are not your fault. Please do not allow yourself to be convinced by anyone, that you have done anyting wrong. He does not deserve your love or loyalty. He has been nothing but cruel and abusive. This is not how it is supposed to be. Even though you have had extensive proof and documentation of your medical issues and the reasons for your horrible chronic pain, your husband still insists on bullying you and treating you badly. A truly loving partner would never do something like that. The last thing you should have to be dealing with is a husband who treats you so badly. If anyone should be begging for forgiveness, it is him.

I wish you the very best with all of the tests, etc that you have ahead of you. I hope you can find the strength to do what you need to do for yourself and your children. Take good care of yourself. God Bless, CMP/MM

 
Old 09-22-2008, 03:46 PM   #9
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Re: can anybody help me, suggestions please.

I agree with cmpgirl and Steve: you should not be apologizing for anything. You have not done anything wrong. You are suffering from a terrible illness, and you deserve to have support and love from your husband. When I first started my journey with pain, my husband was not very supportive. I finally just sat him down and told him I needed more, and that was the last time I had to bring it up. He has stepped up and has become supportive and caring. You deserve the same. I really think family therapy is needed for you and your husband. This is not just something that you need to deal with in therapy. Your husband absolutely needs to be involved. I think you are feeling guilty for something you shouldn't feel guilty for, and he is blaming you for something that is not your fault. Both of these attitudes need to change. I really wish the best for you, both in terms of your pain, and your family situation.

Best of luck to you, and I hope we can continue to be a source of support for you.

 
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