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Cassiesassyr

New member
Joined
Nov 9, 2014
Messages
2
Reason
DX FIBRO
Diagnosis
02/2004
Country
US
State
Nd
I was diagnosed with fibromyalgia in early 2004 when I was 18. I am now 29 n have been dealing with chronic pain with little help from doctors. I feel like every single doc I've tried acts more concerned about addiction then they do about the fact that I'm in moderate to severe pain CONSTANTLY! I have 3 kids to care for and a house to run here n they just won't listen! I hate living like this and I've already tried so many anti-inflammatories n steroids n muscle relaxers, and the last time I remember having any relief was when my doc who diagnosed me gave me 7.5 mg Vicodin. That was a very long time ago n every time I try expressing to the doc that actually worked they say things like we don't want u getting addicted or becoming dependent on them. Well u no what? I don't want to suffer any longer! A decade with no pain relief is long enuf! I'm extremely frustrated and wondered if anyone has any tips/suggestions on what I should say to the doc Tuesday when I see him? I just saw him 2 weeks ago in which he gave me more steroids and more anti-infl meds neither of which provided an ounce of relief. I'm tired of being a ginuea pig. What do I say to make them listen short of bawling my eyes out?! Or maybe that's what I need to to sincerely portray the pain I feel? :x
 

moe1959

Very helpful member
Joined
Sep 13, 2014
Messages
708
Reason
Undiagnosed
Diagnosis
09/2014
Country
US
State
wa.
Hello, I'm so sorry your pain is being dismissed, unfortunately the Dr's are under strict laws about narcotics.
The Dr.I have now is so sweet, but He knows it , and at times uses it to influence my thoughts,at the end of the day, I hang on to what I can do, recognize when I'm about to have a flair up, tell my family, and do what I can. This Fibro crap is definitely not fun, but I'm Adjusting around it as much as I can. God bless!
 

JKerner59

Active member
Joined
May 1, 2014
Messages
80
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
FL
Cassie, are you seeing a pain management doctor? With the new DEA reclassification of narcotics, pain mgt. Docs are the ony docs to put you on long term narcotics....I just had to go to one to get my tramadol...which I have been getting for years from my primary care doctor.
 

Cassiesassyr

New member
Joined
Nov 9, 2014
Messages
2
Reason
DX FIBRO
Diagnosis
02/2004
Country
US
State
Nd
No I am not yet but have been trying to get into see one. I've already been on tramadol for yrs but it hardly touches my pain most days. I'm so frustrated with the constant pain! I wish it would just ease up some so I could at least tolerate it n not think about how I'm hurting all of the time.
 

Forgetmenot

Legendary member
Joined
Oct 6, 2014
Messages
1,549
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
I'm in the uk and atm get my taramdol from my gp ,I wonder if il have to change that soon. Or maybe it's just the usa ?. Anyway I no how u feel darling I have four children and a dog who needs walking twice a day. I sometimes need four tramadol a day with paracetamol which makes it work better to get through the day. I tighten up all over and feel like I have flu.every day every night,your so not alone .some days a walk with the dogs kills me but some days a walk makes me losen up .we don't have a choise of weather we stay in bed or not.and maybe that just as well , I truly believe if I took to my bed I'd not get out of it.
I do t have much helpful tips really , but want u to no your not alone, and when u see that Dr bloody scream if u gotta girl.
 

Brenwood

New member
Joined
Dec 17, 2014
Messages
9
Reason
DX FIBRO
Diagnosis
12/2014
Country
US
State
CA
Cassiesassyr,
Find another doctor! I don't think your guy is a believer. Make some phone calls to different doctors' offices. Ask questions including how they treat fibromyalgia. If all they use is steroids and NSAIDS, then they don't know anything about fibromyalgia. It is not an inflammatory disease.
Donna
 

cmetryme

Extremely helpful member
Joined
Nov 3, 2013
Messages
1,030
Reason
DX FIBRO
Diagnosis
03/2008
Country
US
State
TX
Cass, I'm sorry you are having to deal with this. You will have to see many
Doctors before our find the right one. Keep trying
Doctors. Mostly pain mgt doctors. I understand your pain. I wake up screaming
In pain level 7-8 most mornings. I take 30mg morphine in am n 15mg in eve. Still
Doesn't help much. I have found a med that does help. Fentinayl spray (subsys).
I take a very low dose 200mcg in am then 200mcg in eve. Most folks are
At 1600mcgs per day. See if your pain mgt doc will get you some. Its free to me.
In the meantime you might try CBD pills or salves. Check to be sure its legal in your state first
Seems to give me some instant relief.
Keep coming to the form it helps to talk to people that have fibro that understand it.
 

Cindi D

New member
Joined
Jan 16, 2015
Messages
7
Reason
DX FIBRO
Diagnosis
01/1991
Country
US
State
TX
I too, take narcotics on a daily basis, along with several other meds, I had to find an internist that specializes in autoimmune and immune diseases, she is a pioneer in the field of fibro and CFS. I have to sign a contract about the pain meds and see her every three months, she drug tests me on every visit, and I don't mind that, because I do not abuse the meds., and still have trouble at the pharmacy getting my meds! They still don't take the pain away, but I am able to manage. Your job now is to find a doctor that actually understands fibro! look on the internet in your city. They are hard to find, mine is an hour drive away.
 

cmetryme

Extremely helpful member
Joined
Nov 3, 2013
Messages
1,030
Reason
DX FIBRO
Diagnosis
03/2008
Country
US
State
TX
Cass, how did it go at your doctor?
 

Vellybean

Active member
Joined
Jan 23, 2015
Messages
48
Reason
DX FIBRO
Diagnosis
09/1993
Country
US
State
WI
I totally understand your concern. I have been in pain so bad that I considered ending my life and broke into tears in the doctor's office and was sent home with no help. I do not get why doctors are so afraid to give pain medication that really works. It isn't like I am asking to use them all day every day but just when the flair ups are so bad to break the cycle of pain. I have learned to live with a certain level of pain as I know I will never be free from it but when a person has so many days in a row, where there is no relief, an opiod pain reliever would be welcome. Can't they limit the number of pills they give you and say this is all you will get so don't ask for more? It seems reasonable to me.
 

Forgetmenot

Legendary member
Joined
Oct 6, 2014
Messages
1,549
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
It's funny ,as it seems I. The uk we tend to get pain meds easier then in the use. And yes i pay for my meds but so do u.and you should get them .have you though of saying look I pay my insurance so I want some pain relief .be abit more forceful
 

Vellybean

Active member
Joined
Jan 23, 2015
Messages
48
Reason
DX FIBRO
Diagnosis
09/1993
Country
US
State
WI
I have straight out asked my doctor for the pain meds. They act like I have horns growing out of my head. I have even told my doctor "Listen, if I kill myself tonight, I want you to feel totally guilty because you refused me relief for my pain." I don't think I could me more straight forward than that. Marijuana is legal in some states but not where I live. I am thinking of moving to a state where it is because that offers a type of pain relief. Tramadol did nothing for me either. I also took gabapentin which helped a lot but made me super *****y for some reason. My doctor said it is a reaction some people have. I have seen every specialist there is, including going to the pain clinic, and no one gives you meds they know will help. They are very anti-narcotic here in Wisconsin.
 

girlytoshoes87

Active member
Joined
Jan 6, 2015
Messages
37
Reason
DX FIBRO
Diagnosis
10/2009
Country
US
State
NY
Hmm sounds like my situation. Sorry you are going through this also. Sometimes I only wish for a day..... Have you considered seeing a rhuematologist? I tried the crying thing and my doctor said I needed some anti depressants and counseling/shrink. So Unless you see someone like a specialist you can't expect a family doctor to go out of his way to help you. The only known ones for Fibro are Lyrica and Gabapentin. Lyrica isn't easy to get on and hard to get off them(makes ya feel crazy). And Gabapentin works for a while but wears off and instead you gain 30 pounds. Not many choices. I have some good spells but it seems I have more bad spells then any. Winter weather doesn't help either
 

cmetryme

Extremely helpful member
Joined
Nov 3, 2013
Messages
1,030
Reason
DX FIBRO
Diagnosis
03/2008
Country
US
State
TX
Word of advise never tell a doctor or anybody you want to kill yourself.
I was in ER. My wife told them I might want to myself. Here's what they did no kidding now.
They called the police, wanted me to get into scrubs that were 2 sizes to Small. Talk to a counselor while they wait for the police to take me to a mental hospital. In the meantime my wife got so pissed of at the counselor that she cussed at her and went to the front door to smoke. Shesaw a security guard and asked if she could have the counselor arrested. He said no, but he was waiting for the police to arrive. She ask why are they coming? He told her to arrest a patient by my name. She told him that's my husband and ran inside to my room.
What she didn't know was the counselor let the room and the ER supervisor came to talk to me.
Thank god he sent him to my room. I told the supervisor that I had no plan to kill myself. I explained to him that I have fibro,lupus and many other things medically wrong with me. One night I went to bed and woke up with my legs hurting so bad I had to use a walker for 3 months.
I was just off the walker for about 2 weeks.
I had very severe pain and wasn't sure how I would be when or if i wake up. I told my wife if I die that I love her and my son. I didn't want to die in my sleep and not tell her that. He said I do understand you and why my wife told them that. He called off the counselor and police.
Gave me 12mgs of morphine. Came back in the room and I was out of the bed in a chair consouling my wife. He said with the morphine he gave me I should be out cold not standing and walking. He said wow then told us he couldn't do anything more for me.
Told us to go home and don't come back to the ER as they can never help me.
I'm not kidding. We ran out of the hospital past 4 policeman and to the car.
We have never been back to that hospital. We were lucky! Please please don't let this happen to you no matter how mad you are at the hand god gave you. Get to pain mgt. May take you 3 or 4 trues to get the right doctor. Sounds like you need a new doctor not kill yourself!
Hang in there.
 

cmetryme

Extremely helpful member
Joined
Nov 3, 2013
Messages
1,030
Reason
DX FIBRO
Diagnosis
03/2008
Country
US
State
TX
Cass, u don't have to move to get the legal mj.
Its not the THC in it that helps with the pain. It's the CBD!
Go online and get yourself some CBD and some kratom deliver to you.
Don't be mislead by the mj. Kratom its legal!




No Links Allowed!
 
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