No diagnosis=No meds

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Jadensmommy
Regular Member


Date Joined Nov 2009
Total Posts : 104
   Posted 11/5/2009 6:57 PM (GMT -7)   
Hello everyone! I am really new to this forum, just joined today as a matter of fact! I am a 35 year old mother of a 2 year old, and we live in Indiana. My husband and I have been married for 3 years now. He works full-time and I stay home with our son. Over the past year, my pain has become almost crippling. I have severe lower back pain, shoulder and neck pain, extreme migraines, painful periods and knee pain. That pretty much covers the body, right? I don't sleep very much, usually about 2 hours at a time. I have a PCP, a neurologist, an orthopedic specialist and a gynocological surgeon on my team. The thing is, they aren't really on my "team". Not one of them can find any reason for my pain, therefore giving me no diagnosis. Without a diagnosis, they give no meds. I get so angry a lot of times because my pain keeps me from doing so many things that I want to do, and used to do before this pain! From time to time, my PCP will give me a prescription for 10-15 Lortabs to help me along, but once that is gone, I'm in the same boat I was in before.

I guess I wanted to join this community to have a place to go to talk to others in the same situation as I am in, and also to find some support. My husband is not supportive of my pain, he asks me not to talk about it because he's tired of hearing it.

Thanks for reading this! I look forward to meeting you all!

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 11/5/2009 7:16 PM (GMT -7)   
 
 
   Dear Jmommy,
 
      Good evening. My name is Dani. It is a pleasure to meet you. I am glad you came to healing well. It is a wonderful place for support, understanding and knowladge.
 
     I am sorry you are having a hard time getting a diagnosis. Do yoru doctors communicate on a regular basis? Is there a plan in place to restore your quality of life? And more importantly have you seen a pain management specialist yett? Pain management specialists are very skilled at pin pointing the source/s of pain and treating them. Also, usually, work towards "whole wellness" if you can find the right one. I am sorry to bombard you with questions, I do worry you arnt having your needs met. Not having your pain treated must be increadibly hard for you and I am so sorry you have to endure through so much! *hugg*
 
     Again, a big welcome *warm hugg* And I look forward to getting to know you better as time goes by.
 
*huggs*
   dani

 

 

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood

 

 


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 11/5/2009 7:18 PM (GMT -7)   
Jadensmommy....

Welcome. I'm so sorry that you have so many pain issues. More on that in a minute. But I'm glad you joined the board. This is a really supportive place with many, many kind, compassionate members. I look forward to getting to know you better, and learning more about you.

I'm 36 years old, also an at-home mom; we have six sons, ages 5 to almost 15. I have very similar pain issues as you do - except the knee pain. Yep, it pretty much does cover the entire body...unfortunately!

While I'm glad you have a team of docs...I really wish you had someone to help you w/ your pain issues. What have they looked for in you? Did you have a fall or any type of injury that preceded your chronic pain? Have they looked at fibromyalgia? Shoot, you can have "chronic pain" just having "extreme migraines" and painful periods!

Have you tried finding a Pain Management doctor? Things really seem to change for many people on this board when they finally find a supportive pain management doctor. A good pain management doctor (in my opinion) will try multiple things to try to help you w/ your pain issues - be it medications, trigger point injections, surgery, physical therapy, whatever. In addition, you seem to have maybe more than one pain diagnosis going on. While I think a diagnosis is important and something that you work towards figuring out.....the fact remains that you are in pain, regardless of what the diagnosis is. And that pain deserves to be treated!!

I'm sorry that you don't have a support system in your husband. My husband knows of all of my issues and such....and doesn't really make "negative" comments, per se. But he doesn't understand much of it....so I really have to find my support system in a different place. This board is a big part of my support, as well as friends and a couple other family members. Actually, my husband was more of my advocate in the beginning... But, after five years or more or this stuff, it's not the same like it used to be.

Anyway, let us know more of what they looked for, etc. and if you've looked for a PM doc. And anything else you want to share!! I really hope you find good support here yeah

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


Jadensmommy
Regular Member


Date Joined Nov 2009
Total Posts : 104
   Posted 11/5/2009 10:42 PM (GMT -7)   
Thanks for the replies Dani and Mom. I've been looking at threads all over this forum and have been getting helpful advice just reading others' stories.

Dani, there is no plan to restore me to a state of wellness. My doctors basically say, if there's no diagnosis, then we can't help. I tried to get referred to a pain management doctor here in town, but my PCP refused to give it saying I didn't have a diagnosis to warrant seeing a PM doctor. I am working on that right now. I need to call my insurance company tomorrow to find out if I need a referral to go to one. I'm not sure of that yet. I did not have a specific injury that started my pain. I've had little injuries to my back over the last 10 years or so, and the pain of those injuries just stays with me. With my knees, I've been diagnosed with Degenerative Joint Disease in both knees. I am in physical therapy right now for the knees. As far as my migraines go, I have the most stubborn neurologist ever! LOL He just won't stop trying things that have never worked in the past. My patience with him is quickly running out.

I did the unthinkable tonight. Well, the unthinkable to me anyway. I went to the ER because my pain was so bad. I got a script for 15 Vicodin. Hopefully that will help me over the next few days. By Monday, I'll just be out of luck again.

Again, thanks for the replies. I hope to talk to you guys again soon!

Tammy

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 11/5/2009 11:44 PM (GMT -7)   
Hi, Tammy,
Welcome to the chronic pain forum of Healing Well. You know just because a doctor can't find the cause of your pain doesn't mean it's not real, and needs to be treated. For many of us (myself included) our PCP isn't willing to prescribe narcotic medications long term. And it is true you need to have somone who's more willing to search for causes. I'm not a doctor and am not giving medical advice, but it sounds to me like you have more than one thing going on!

I would agree with your feelings that maybe it's time to kick that neurologist to the curb and find someone who will do something to HELP you, and usually if they do enough testing and the specialists still can't find the cause (which doesn't mean you don't have a diagnosis) then it's easier to get a referral to a PM doctor. But if you've been reading here you know a lot of us struggle finding doctors that are a good match for us.

This is a great place for support and information, and I'm glad you've joined us!

Again, welcome.

PaLady

BigLucy
Regular Member


Date Joined Mar 2007
Total Posts : 413
   Posted 11/6/2009 1:24 AM (GMT -7)   
As CrazyCat stated, you are just at the beginning of this world and I am overwhelmed just thinking about all the things I could write or say about chronic pain/illness. I believe I can speak for a lot of us, a common theme is the endless MD appointments, no diagnosis/misdiagnosis/plain just don't know yet. So, although it seems slow and frustrating, your experience is not uncommon. Doesn't help when you're in pain though and the only thing to do about that is to be the squeaky wheel, without annoying your healthcare providers. I would recommend you call up your primary MD and update him/her about your ER visit, how your pain was intolerable and can you come to see them to discuss what can be done to avoid going to the ER in the future; you need to be firm about not willing to live with chronic pain. Continue to read past posts, you will definitely get a variety of experiences people have been through. I also recommend a book, How Doctors Think (gave me ideas on how to get to the point with my doctors). Best of luck.

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 11/6/2009 2:49 AM (GMT -7)   
Hiya mommy! I too would like to welcom you to the HW forum. We, as pain patients are sometimes overlooked because the doctors think that because they cannot find a location for our pain, that we are "faking it" or "looking for attention" but we aren't! The thing is, most CP pain patients the doctors can find a reason for, but every now and then there comes along a CPer that one cannot understand. I read somewhere that 1 in 5 people suffer from chronic pain. To me that is way to much! I am so sorry that you are in pain and that the doctors are not helping. Unfortunately most of us that suffer have problems with getting meds, maintaining our sanity and keeping from pulling our hair out! LOL.

Anyway, I wanted to say hello and welcome you to the site. Hope you feel better soon.

Scarred
What doesn't kill us only makes us fight back harder! :P


bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 11/6/2009 5:16 AM (GMT -7)   
Mommy, I see you're in Indiana, I'm in NW Ohio. My PM doctor is in Ft. Wayne. They do procedures and prescribe meds. So far I've been happy with them. He does require a referral from your doctor though even if your insurance doesn't require one.
---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


Jadensmommy
Regular Member


Date Joined Nov 2009
Total Posts : 104
   Posted 11/6/2009 10:21 AM (GMT -7)   
I really want to thank you catlady for your suggestion to start a pain journal! That is something I have not thought of, and it makes sense to document everything so that the doctor can see what's going on. I am a very organized (type A) personality so keeping a journal is right up my alley! I'll be starting one TODAY! I will be seeing my PCP next week to discuss these problems so hopefully I can show her the pain journal and keep her up to date on what my problems are. Maybe then I will get that referral that I need to the PM doctor! I've heard there is a really good PM doc here in my town so that's convenient! I just hope he and I are a good match! I am not passive when it comes to my health care, in fact, I find I'm quite aggressive when it comes to finding help for myself.

Anyway, thank you all for your responses and kind words. Hope to talk to you all soon!

Tammy

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 11/6/2009 11:38 AM (GMT -7)   
   Shame...shame....shame! on your husband! This makes my blood boil to hear a story like this. My wife did not go that far, but I could tell that she had little sympathy for me,....untill she went down in the back.....a few pain pills later, and still in pain....her attitude changed Dramatically! :) She is very supportive now! I'm at aloss for what might be hurting you, but have they looked at Fibro?  I wish you the very best, and please visit here often, and keep us updated. We are all real people, suffering from some form of Chronic Pain.....so your not alone here. Feel free to also visit the Chat night when they announce it here.....its lots of fun to see everybody there at the same time. Take care now! :)

privey
Regular Member


Date Joined Oct 2009
Total Posts : 453
   Posted 11/6/2009 11:50 AM (GMT -7)   
J's Mommy,
I'm so sorry you can't find help. It is so difficult to get these docs to listen...I know and understand where you are coming from. They have some preconceived notion before you even open your mouth to tell them. Then not to get the support you need at home makes it worse you have no place to vent your frustration. I'm glad you found this site. I haven't been a member for very long but the support and help is amazing. Keep coming back, we all care.
Cathy

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13470
   Posted 11/6/2009 1:13 PM (GMT -7)   
Hi Tammy and I too would like to welcome you to Healing Well. You have come to the right place for sure. As you can see from the replies you have received you are not alone in this pain problem.
 
As for my two cents worth for what it's worth, lol, I would start over with a "new team." Beginning with a new PCP to make all the necessary referrals to see what specialists that may be deemed necessary. You need drs that will work with you and not against you. It is really sad to see someone come along and hear the about the problems they have getting a dr to help them. Unfortunately, this happens much more than you probably realize, so please do not think they are singling you out. It seems to be getting harder and harder to find a dr that is willing to listen to a person and then try to help them. You should check with your insurance to see if you need referrals to see specialists, some do some don't. You will find that most pain mgt drs want a referral from another dr. so don't be surprised if you are told this.
 
Has any of the drs done any kind of testing on you at all? Have you had any MRI's and know what they showed? If you have had an MRI or even a CT Scan you need to obtain a copy of the written report for your own records. Many times drs will say an MRI is within normal limits and its not.. A person can have problems showing up, but the dear old dr does not think thats what is causing the problem.
 
I am sorry your husband is not more sympathethic to your plight. But, I understand because my husband does not understand my CP at all. CP is not something you can see like a cut or bruise to know why you have the pain. Many times people just do not get it. But that is also not to be indicate you don't have a problem either. Sometimes family members and friends get tired of hearing about our pain. I rarely discuss my health issues with anyone, the people on this forum know more than my very own family. I just prefer to keep it that way, less conflict lol. Most men are fixers, they like to fix things, they can't fix us. Just don't let it get you down.
 
Please do come here and post and tell us how you are feeling or if you need to vent, do it. You can pretty much just unload that burden on your shoulders here, we have lots of ears to listen with. 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.


Jadensmommy
Regular Member


Date Joined Nov 2009
Total Posts : 104
   Posted 11/6/2009 4:31 PM (GMT -7)   
I started my pain journal today, keeping it very organized with the date, time, area of pain, duration of pain, type of pain (throbbling, stabbing, etc.) and a pain scale number from 1-10. I'm hoping that when I see my current PCP, she will have some ideas. If she doesn't want to help me, I will definitely be shopping for a new PCP. I also contacted my insurance company today to see if I needed a referral to a PM doc, and they said yes. But they did give me the idea of contacting my other doctors for the referral. Maybe one of them will give the referral.

Today was a pretty bad day pain-wise. Lots of aching pains in my lower back, neck and shoulders. I was able to take my Vicodin, and use my heating pad to help relieve some of the pain. My mother picked up my son today and will be keeping him for the weekend so I can rest. It's hard to run after a 2 year old when you're in alot of pain.

Thanks for the hugs and kind words!!

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 11/9/2009 7:56 AM (GMT -7)   
I would have to ask, but have you had any MRI's done? contrast mri's usually show more than the
regular mri's..Maybe ask your pcp about a contrast mri of your lower back and knee...also try ice packs and
heating pad and find which one helps better and use that...The pain tracker is a good start, for me I'm usually a 6 to 8
on the pain scale and today is definitely a 7 1/2 right now...if your current pcp if he/she's not
wanting to help your chronic pain issues then maybe go to another pcp to get your referral, it's just
so sad how very very few doctors today want to help chronic pain patients....good luck to you at your appointment
keep us posted and lots of soft hugz and prayers...
((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((Jadensmommy)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
hugz
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********


privey
Regular Member


Date Joined Oct 2009
Total Posts : 453
   Posted 11/9/2009 9:30 AM (GMT -7)   
J'smomma,
I've been to the chiropractor a lot in the past and he told me that if you have a burning pain use ice, because you don't treat a burn with more fire but if it is muscle pain use ice and heat and rotate. It made sense and I did the ice on the lower back that pain that ran down my legs sciatica (sp) and it did help. He also suggested I lay on the floor and put my legs up on the couch at the bend of my knee to take the pressure off the disc.

Cathy
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