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AFLady-Army Mom
New Member


Date Joined Oct 2009
Total Posts : 14
   Posted 11/4/2009 9:43 AM (GMT -7)   
Hi Everyone!  I've been a lurker for a long time, but don't normally post.  Reading about other people experiencing chronic pain helps keep me sane.  Thanks to you all!  I have a dilemma I'd like suggestions on:
 
My hx -
I broke my tailbone in childbirth 20 yrs ago
Whiplash from an accident 21 yrs ago
Was in a car accident 10 yrs ago and had 3 compression fractures in my t-spine
Chiro in 2006 adjusted my neck and my head and neck went numb for 2 days (he told me not to ever adjust my neck again)
Late 2006 I woke up and my right arm was numb
Early 2008 had 1 lvl Cervical Fusion
 
I've been in chronic pain since car accident 10 yrs ago.  All the drs. I've seen have said my injuries don't explain the amount of pain I have had and treat me like I'm a crybaby.  I've been trying to deal with it the best I can and I never really got any treatment until after I retired from the military in 2006.   
 
Since 2006, I've still been a military dependent so was required to go to base hospitals for treatment.  My primary care mgr was a nurse practitioner who tested me for a few things (lyme disease and MS), but when when she didn't find anything - referred me to a Neurologist, Pain Mgmt. and PT.
The Neuro started out optimistic - thought I had some unusual headaches or migraines.  I told him I didn't have head pain, but he insisted he was on the "right" path.  Well, after about 5 medication not working, he gave up and told me to go back to PM.
The PM Dr. has tried all types of NSAIDS (which don't help), different injections and nerve burning.  It seems that anytime he sticks a needle in my neck or back, my muscles spasm and my pain increases.  He also prescribed several other types of drugs of which the only one that helps is Cymbalta, which I've been taking for over a year now.  It helps reduce the buring pain.  Since most of the pills and injections haven't helped, the PM dr. doesn't want to prescribe any "pain" meds and makes me feel like a whiner and/or a drug abuser.  The most I have ever gotten from him was percocet, and in a very limited quanity.  I save them only for days when I am curled up in a ball crying and want to die.  Otherwise, I'd run out in a couple days.
I went to PT for a while.  They were also very optimistic when I started, but eventually realized that my muscles lock up and are painful regardless of what they do - so they gave up on me too.
The PM referred me to a Neurosurgeon after the 1st yr, and he found disk degeneration with some nerve impingement and lots of bone spurs throughout.  He did the fusion surgery and i was a little better, but when I said I still had problems, he seemed frustrated and said maybe I should see a different neurosurgeon. (gave up on me)
 
Current:  I'm taking just motrin and robaxin or skelaxin and cymbalta.  I have severe muscle spasms in my back and neck.  I have stiffness to the point that I walk like a really old lady if I stay in one position for more than 15 minutes.  I have sharp stabbing pain in my shoulder, arm, hand and back of head (not constant, but several times a day - feels like someone walked up behind me and stabbed me in the head with an ice pick). I have burning in my shoulder, arm, head and side of my face.  Exercise used to help, but now even wking will make my right arm go completely numb and overall pain increase.  Yoga helps some when I can do it.
 
Sorry for being so long - but now my dilemma is that I've changed my insurance and can choose a doctor.  I tried to choose a Family Practice dr. I heard good things about, but the office asked me questions when I tried to get an appt and they called me back and said the dr. will not be accepting me as a new patient.
 
I really need to find someone who will help.  I have no idea what's really wrong with me.  The PM said it could be degenerative arthritis and that the joints above and below the fusion fail frequently after a fusion.  He also said that muscle spasms like I have usually mean there's still an injury somewhere. 
 
What kind of Dr. do you all think I should try to see?  Do you have any recommendations on what to say or do so they take me seriously and dont give up on me?  And - if the PM dr. is correct and short of more surgeries, there's nothing that can be done - how do you recommend dealing with chronic pain like this without regular pain meds?
 
Sorry again for being so long winded - and if you've read this far, thanks for taking the time!  I'm getting really discouraged as it seems things will only get worse with no help in sight.
 
 
 

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13470
   Posted 11/4/2009 10:21 AM (GMT -7)   
Hi Army Mom and welcome to Healing Well. I am so glad that you decided to post. I read your post and it just made me so mad that the medical community has taken the position they have with you, its not right, but there is help out there. If you have been lurking awhile then you know in many cases we have to advocate to get good health care. It just pretty much goes without saying that our medical drs seem to be getting more less caring each day, sad but true.
 
I personally feel its a plus that you have insurance and can pick your own drs. Being in the military you were stuck with getting care from them. I do not know what kind of ins you have and the coverage. The very first thing I would do is find myself a good PCP, perhaps an internist that is on your plan and accepts your insurance. If you can get online with your insurance company and plug in a PCP in your area I would look at the list and then find an internist if possible. Its always hard making a cold call on a dr never knowing what to expect. But, if you can find one that you like this dr can make referrals for specialist including a pain mgt dr. If you get in to see a PCP and do not like him, no problem look for another one. You must keep looking till you find one thats fits. A good PCP can send you out for MRI's and CT Scans to get an idea as to what is going on with you. Remember these drs work for you. Surgeons only want to see people if they are surgical candidates, orthopedics are good for bone problems. Personally, I prefer a neurosurgeon simply because he is more schooled with the nerves than an orthopedic.
 
There are two types of pain mgt drs. One does procedures and injections only, he will not script pain meds. The other one will do the same as far as injections and such, but he will also give scripts for pain meds. People that have CP truly need to be under the care of a good pain mgt dr. These guys are specialty drs in in treating pain issues. Alot of other types of drs take a different attitude towards a patient if they say they are in pain. Sad but true we are looked at as if we are drug seekers when all we want is help. This is why I say pain mgt. Most pain drs will not accept you as a patient unless you are referred by another dr. A PCP can make a referral to a pain mgt dr.
 
Most of all is you are not alone and deserve to have medical help to get you back on your feet and functioning as a person again. It is possible but it can take some hard work finding the right drs. No one should live how you are living in pain with no help, no one should be forced to feel bad about themselves because they have medical issues. You have taken a big step by reaching out to this forum and please come back and stay with us. You can learn alot from the many people here.
 
What your dr said about the fusion in your neck is true, many times as the years pass the fusion does put stress on the levels above and below the fusion resulting in other disc problems developing. An MRI can be done to rule this out.
 
Take care and get to looking for you a good primary care physician to get you back on the road to living. When asked why you need to see the dr. I would simply say now that you have private insurance you are needing to establish yourself with a new dr. on your plan. Once you get the appt and go in and see the dr tell him/her whats going on and aske them to make all the necessary refferals they feel necessary.  Oh, by the way, this group of people we have here, we don't let people give up on themselves because we know there is help out there. Hugs coming your way.
 
Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


Becky83
Regular Member


Date Joined Nov 2009
Total Posts : 20
   Posted 11/4/2009 10:34 AM (GMT -7)   

Hey Army Mom.

I fully understanding your stituation. I've been in constant pain for the last 18months with no diagnosis and all the tests that have been done show nothing is abnormal or no reason why i'm in pain. Many days i cry with frustration and often i cry myself to sleep because i feel like i'm in limbo with no way out. I know i'm in pain for a reason and i know that there is something wrong with me, admittedly not what condition it is. There are so many doctors out there which fob you off and try to pin illness' they can't explain on previous illness. My honest advice to you is research you syptoms more and doctors that can deal with them. I think the most important thing in patience and faith that someday things will get better. I really hope this helps you.


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 11/4/2009 3:10 PM (GMT -7)   
AF Lady-Army mom
 
First off I want to Welcome you to Healing Well Chronic Pain Forum, Second thing I want to reassure you that we will not abandoned you here on this forum! As you know from your "lurking around" we are not Doctors and we can not fix people, but we are a extremely caring and compassionate bunch of folks that know well what you are going through and we do care and will give you advice if  you want it and all the support you could ever dream of wanting. Now to clarify some things are you Retired from the Air Force? But you husband is still active Army? If that is the case, do you have VA disability? Are your spine problems in any way service connected? Sorry for all the questions, but they are important! Many of the things you have mentioned, I have heard myself about my condition, I had a C6/7 diskectomy and fusion in 1985 while I was in the Air Force. I am also retired AF. I did not get disability from the AF on retirement, I took all my medical records to the VA office right after I retired and they went through them with a fine tooth comb and I received disability for my disk fusion and had a host of other things listed down as service connected problems! Anyway  The only thing I will tell you is that I found the AF had excellent Dental care while I was active duty, but I can not say that about the AF or Army with their medical care,  I will not go into details but if you can see a Nave Doctor I would highly recommend you try that! You seem to have allot of the same problems that I have had. Pain is unrealisticly high  for what the injuries show on the MRI and Xrays and other test!  Note here I DO NOT Think you are a Crybaby! !!!! I know all to well how Doctors especially AF and Army Doctors make you feel!  An Army orthopedic surgeon told me I was malingering and sent me to a shrink, for my pain! 6 weeks later it was discovered that I had a massive herniated disk at C6/7 with free floating fragments in spinal canal!  So I can empathize with what you have and are currently experiencing!   Your post has stirred up some very deep seated emotions and feelings in me!  So please know I will do anything and everything I can to help you on this! Anyway you really need to look into finding a good civilian Pain Management Doctor, I would also suggest checking in with the VA on entitlements, and  are you able to work? if not I would also be looking at applying for Social Security Disability SSD.  The last two things will take time, that is why it is important to start applying now.  But the main thing now is getting good medical treatment and care for your pain!  I would not rely on AF or Army Docs for that! 
 
Anyway AF Lady I again Welcome you to our family,  I do wish you well and if I can be of any help to you, just let me know, through the post here or E-mail.
Good Luck to You!
 
White Beard
 
P.S.  I also want to extend a warm Welcome to you Becky 83  I am  also glad you have found us, I hope that you will become an active member of our family here on the Chronic Pain Forum.  I also wish you only the best !  Just because they haven't found the source of your pain does not mean that there isn't any reason for it! So don't give up, we are here to help and support you!
Moderator Chronic Pain
 
I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--   DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in  Sep 2009,  C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 11/4/2009 3:50 PM (GMT -7)   
Hi, AFLady,
I want to add my welcome to the chronic pain forum - from one lady to another! :-)

Seriously, I'm sorry for all you have gone through and are going through. I don't think I can offer any more suggestions than you've already had from Straydog and WhiteBeard. I do agree that now have "civilian" insurance may give you more options, but WhiteBeard can sure guide you in that area re: VA benefits, etc.

I think Straydog also mentioned it but try to not give too much info. to any new PCP's office over the phone, although you don't have much choice but to answer questions. I guess as I write this I also think on the other hand if a doctor doesn't want to take you on with what he/she may see as too many complications (i'm just guessing about this, I have no clue why that PCP decided not to take you) better to know that in advance. But if they hear too much about pain issues and think you're wanting pain medicaiton from them, that could be a problem. If anything along those lines is mentioned, maybe best to say you're looking for help getting to the right specialists, including for pain management. But even then there's no guarantee. As has been mentioned if you've been reading here you know many of us face a host of challenges with finding good medical care and PM docs. I myself am right now in that boat - so grab an oar and hop in!

Again, I just want to welcome you!

And Becky, I want to welcome you, too. I'm not sure if you started a thread of your own; if so, I and I didn't get to it, I apologize!

AFLady-Army Mom
New Member


Date Joined Oct 2009
Total Posts : 14
   Posted 11/4/2009 4:14 PM (GMT -7)   
Thanks to everyone for all the replies!

WhiteBeard, I'm so glad you can understand how military docs can be - plus how whining too much or going to the docs too much while you're active duty can hurt your career. My last PCM wouldn't even prescribe me 800 mg Motrin, and then recommended a book called "Mind over Back Pain" - and that was just a few months before I had the cervical fusion surgery. I retired in 2006 after exactly 20 yrs. My body couldn't take another deployment to the mid-east carrying huge duffel bags. My husband just retired last month. That's why I can finally change my insurance! My oldest son is in the Army. I haven't filed for VA disability yet (I know - I know). My medical records are huge and I have a bazillion things to include, so I just get overwhelmed everytime I start. I am working full time and am going to use tricare standard with a tricare supplement, so I can go to any tricare doc. I think I've gotten so used to just doing whatever I had to do in the military, that I am able to force myself to come to work everyday. But - I know I am not nearly as effective or productive as I should be since I'm distracted by "ice-picks" in my head or back - or my arm or hand being on fire - during the day. I also forgot to add that I also have sciatic pain, so if I sit for too long I can't walk without sharp pain in my butt! (and I have a desk job)

I just made an appt with a primary care doc near my work but my appt isn't until mid Dec. Hopefully it's worth the wait. I'm going to try to get in to see the PM doc in the meantime and keep trying yoga.

I feel a lot better after typing my entry today. I don't talk about my pain much to anyone so it's really good to let some out... Thanks again everyone!

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 11/4/2009 4:32 PM (GMT -7)   
AFLady,
Sure can understand about feeling overwhelmed with those medical records! I am so tired os everyone requesting every word that's ever been written about me and I used to be able to keep it organized but a year or two just threw up my hands in despair.

I know it helps many of us to have somewhere to vent, cry, be scared, whatever. So I'm glad you decided to post. Others will learn from you, too.

PaLady

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 11/4/2009 4:42 PM (GMT -7)   
AFLady-Army Mom...Welcome to the board. I've been a member here for a long time, although it's been awhile since I've posted due my health issues. Anyway, it's a very supportive board and, although I'm sorry you have chronic pain, I'm glad to have you join us.

Others gave you some great advice; I really don't have anything to add in that department; other than I completely agree that finding a good pain management doc is absolutely the way to go. Please don't let anyone, doctors included, make you think that you are whining, or that your injuries don't measure up to your pain levels, or whatever. If I could have learned anything sooner, it would have been this.

I understand how frustrating and discouraging things can get - especially when you don't have a doctor that is supporting you w/ your pain issues. I went through years of searching for the right doctor. Now, to have a doctor that listens; empathizes; knows the pain I'm in - it has made all of the difference in my own attitude about things. I really hope you can find the same. I think all chronic pain patients deserve a doctor who is like this.

This board is a great place to share things that not everyone would understand. I look forward to getting to know you better. I'm glad you posted!
--Tina
Pain Issues: Neck/back pain; migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands, arms, feet; I also have POTS/dysautonomia; CFS/Fibromyalgia; Severe Hypertension; Hypothyroidism; Addison's Disease; Central Sleep Apnea; etc etc

Meds: MS Contin (480mg daily); Dilaudid (8mg/3x day); Actiq (1200 mcgs/1x per day); Soma (3x day); Atenolol; Midodrine; Phenergan; Effexor and on the list goes...

Future Plans: Intrathecal Pain Pump; already completed trial; awaiting my decision for implantation


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 11/4/2009 4:44 PM (GMT -7)   
Oh, and Becky83 - welcome! I agree, I hope you will start your own thread and introduce yourself.... Anyway, I'm sorry you are in pain but I'm glad you are posting here! --Tina
Pain Issues: Neck/back pain; migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands, arms, feet; I also have POTS/dysautonomia; CFS/Fibromyalgia; Severe Hypertension; Hypothyroidism; Addison's Disease; Central Sleep Apnea; etc etc

Meds: MS Contin (480mg daily); Dilaudid (8mg/3x day); Actiq (1200 mcgs/1x per day); Soma (3x day); Atenolol; Midodrine; Phenergan; Effexor and on the list goes...

Future Plans: Intrathecal Pain Pump; already completed trial; awaiting my decision for implantation


privey
Regular Member


Date Joined Oct 2009
Total Posts : 453
   Posted 11/4/2009 4:52 PM (GMT -7)   
Welcome AFLady I'm new to these forums but not to chronic pain. I've found this to be the right place for me to ask question and to vent I learn something new everyday.
Cathy

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13470
   Posted 11/4/2009 9:47 PM (GMT -7)   
Wow, you have to wait a long time for that appt, I am so sorry they could not see you sooner. I am so glad you posted because WhiteBeard can help you in many ways here with all of the military hoopla. I had my own horrendous nightmare with military drs concerning my daughter when she was 11 yrs old'. Thanks to their intelligence I nearly lost my daughter. So, I do not have one good kind word to say about those people other than they were not even a good quack.
 
Never for one moment ever think you are whining when you come to this forum. With what you have described I really do not know how you keep pushing on.
 
I also wanted to let you know most pain mgt drs will not see a new patient w/o a referral from another dr, so do not be surprised if you run into this. If this turns out to be the case then I woul d try finding another PCP and getting an earlier appt, Dec is a long way off.
Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 11/4/2009 10:33 PM (GMT -7)   
AF Lady
All I can say is Please call your local VA Rep, and talk to him about your situation. Maybe he can take your military medical records and go through them and get the information they need ( they did that for me) Anyway the sooner you get that done the better off you will be, they will then want you to come in and get a VA physical and check up. I would definitely make that a priority item!
 
 
Your arm pain sounds all to familiar, and that concerns me,  You definitely need to see a GOOD neurosurgeon!  That is the type of pain I had and it was caused by nerve root impingement! Do you have any other bad cervical disks? or Bone spurs? When is the last MRI that you have had on your cervical disk? Have you had any EMG studies on your arm? This is something that definitely needs to be looked into! Please becareful especially with any lifting or doing stuff bending over and straining your neck. Anyway do not over do it and even with a desk job, that can be hard on a back! So Please be good to your self! and call that VA Rep!
 
 Take care of yourself AF Lady
 
White Beard
Moderator Chronic Pain
 
I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--   DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in  Sep 2009,  C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 11/5/2009 4:35 AM (GMT -7)   
Looks like everyone has you covered with information. I just want to say Welcome to the forum and hope everything goes well for you. I too have had cervical fusion C-5/7 and the arm pain is what I had too. Got so bad that I lost the use of my left arm for quite awhile, couldn't lift it more that a few inches. Hope you find a doctor soon. My insurance doesn't require a referral to see a specialist but my PM doctor & Orthopedic surgeon did require one to be seen. Do be careful with all the anti-inflammatory drugs they tend to be hard on the stomach.
---Jag---
 
DDD, osteoarthritis, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus left knee 2000 & 2002, buldging disc L-2/3

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