So, today the pain got so bad I couldn't take it. The doctor's office couldn't make me an appt., so off to the ER I go. I was wheelchaired into a room where I laid for three hours. The doc comes and asks me if I have fibro. I said yes and she said ,,,, what do you want me to do? I said I am hurting like hell. I need something to help with the pain. She gives me a shot of toradol (she said its like morphine without the side effects). I walked out the best I could. They didn't even wheel me back out! Nevertheless, the shot was a joke bc it didnt do a thing! I called my neurologist and the receptionist said she would get the doc to prescribe me something. I call the pharmacy and there is nothing there for me. Why is it I can't get anything to help the pain? I asked for a pain management doc weeks ago. Found out today the neurologist said my PCP was to do it. Called PCP. He said he had nothing in my file about it. How hard is it to make a phone call? So, I made an appointment to my PCP for Wednesday with the hope I will receive something to help me manage the pain. This healthcare system is ridiculous to say the least! What do you all use to help with the neverending horrific pain?
Susan,
Everyone is different seems. I got off all my meds for fibro pain and fagitue and did it with diet changes. I had bad side effects from the rx drugs and almost died from Tramadol. I have an MD who practices alternative medicine. This is how I deal with it. The changes that I made in my diet tramatically decreased my pain and fatigue levels. I follow an anti-inflamatory diet, no gluten, sugar, dairy and follow vegan type diet, got off all meat too. No nightshade vegetables. These things are inflamatory and have an effect on your pain levels.
When people ask me, I tell them to find an integrative physiciain, holistic MD. I still have a rheumatologist too but most of my help comes from the integrative MD. That's what finally gave me relief that is tolerable. I've been dealing with this for fifteen years so I've tried everything, but that's what worked best for me.
Ally
Hi Susan,
I went back over your profile and other postings. Just the fact that you have Raynaud's should have been an automatic call-in for a Rheumatologist. You undersatnd that I am not a Dr, not trying to make a diagnosis, but I'll just let you know my thoughts at the moment, I also having Raynaud's Phenomenom, as well as Sjogren's Syndrome, can tell you that trouble swallowing to me makes me think of Sjogren's or Thyroid. http://www.sjogrens.org/home/about-sjogrens-syndrome/symptoms/dry-m... However it could be other things, and really only a good Dr can make that call.
http://thyroid.about.com/cs/hypothyroidism/a/hashivshypo.htm All the more reason to be carefully examined by a good Rheumatologist.
Wow, I never knew there was ANYTHING like Morphine, without side effects, did you? It does look like it may have helped some. I am not familiar with it, I don't recall taking it, but not positive. I take morphine (Opana, and it has just gone generic, however I cannot tolerate the time release type) Here's what NIH says, perhaps in a stronger dose it may have helped. I'm surprised you were given anything. I know that sounds terrible of me to say, just true. http://www.ncbi.nlm.nih.gov/pubmed/16306736
So sorry that you went through all of that with NO relief. Seems like the ER is the last place to go for pain, that is what I am gathering from what I have been reading, as well as my own personal experience.
So what is the Neurologist doing for the Raynauds? A vasodilator? That is what I was given, I have been told by the Rheumatologist to only take them when i need them, they don't seem to do a great deal, but I really limit my cold exposure. http://www.mayoclinic.com/health/raynauds-disease/DS00433/DSECTION=...
If I understand it correctly, the difference between Raynaud's disease and Raynaud's Phenomenon is that if another autoimmune disease is present, then it is phenomen and considered to be an autoimmune disease. If no autoimmune is present in the body in any form then it is Raynaud's disease and considered a circulatory disease. Here is a link, see if you have the same understanding.
http://www.health.am/vein/more/raynauds_disease_raynauds_phenomenon/
My GP has tried for years to get me to take Morphine as a maintence drug, I have resisted, he keeps prescribing it that way, although I would only take it when the pain was intractable, seven or eight years later, I am having to take it more and more like a maintence drug. I have to take Phenergan 1 hour before so that I can 'keep it down'. My Rheumaotlogist has given me Valium to take at bedtime as a muscle relaxant. I have to take it either 2 hours before or 2 hours after. It is usually a good combo that allows me to sleep.
You must realize that I have Psoriatic arthritis, it is my primary autoimmune disease, and it is the Spondylitis type (attacks the spine) it has caused irreversible joint damage, especially the SI joints, and caused spinal stenosis of the tail bone, degenerative disc and facet diseases and Costochondritis. THESE allow me to get opiates, not the fibro, by the way, Rheum says this chronic pain, caused the Fibormyalgia. I have also been rear-ended three times, the last one I could never get over, kept telling them I had broken bones, still feel like I do after all fo these years!
You REALLY do need to see a Rheumatologist, probably a pain management Dr too, if your primary Doctor will not prescribe for you.
I hope this has helped you, my friend, if not just disregard, no offense taken. I am ever hopeful that you can get fully and correctly diagnosed and prpperly treated!
Wishing you well!
Love and hugs,
SK
Hi Susan,
I am so sorry that you are going through all this. And I agree that he healthcare system we have in place sucks. I am fortunate that myPCP will manage my pain. I take MS Contin twice a day. And I have dilaudid for breakthrough pain, which has only happened once in the month and a half I have been taking the MS Contin. I get why docs are reluctant to prescribe narcotics and my PCP has told me that pain management here n dothan ( yes, only one here in Dothan) will on
Y do procedures and then send you back to your PCP for any meds (narcotics) and my rheumy said she would absolutely not prescribe narcotics because I am “too young”. What the f*** does age have to do with pain? I can’t go to another rheumy because there are only two in dothan and the first one was worse than this one so my options are pretty limited unless I want to drive 1 1/2 hours one way to attempt to find another doc. I hope that you get some relief from someone. Let us know if you have any progress.
Wow I would give my right arm to have a doctor willing to give pain meds for pain. My last doctor put in my medical chart that I have pill seeking behavior. I am deathly allergic to codeine and have back reaction to pill morphine. So very limited on what I can take. My prescribed pain med has always been Vicodin 5/500. Very quickly built up a tolerance to it. So I went back after months and asked if he could prescribe me more then 2 a day or give me percocet for break through pain. Next thing I know go to get refill and Pharmacy told me Doc office cancel any and all future Vicodin refills. That I need to go see Doctor. went and he told me that I was addicted to Vicodin no way could anyone look as healthy as I do be in as much pain as I say I am in. He told me he noted it in my chart that I am a pill seeker. Now on one will give me anything for pain. Not even when I delivered my 18month old. No epidural or pain meds before only a shot of fentanal after. Nothing else after that. So now I take anywhere for 3000 -10000 mg of Tylenol a day thats 6-20 a day almost everyday. Maybe when my liver is shot will they finally believe I am in pain.
YES HE WAS So because my former doctor did not truly believe that fibromyalgia is a condition that is horribly painful. He thought because I have learned to live with my pain that I am not in as much as I say I am. I live in the 8-10+ pain relem everyday. I have not had a day less then 6 since I was preggers. Funny the most unbearably uncomfortable time in life and I had less pain then now. I flat out turned down methadone when the doctor who treated fibro patients said that's what I needed to be on for pain. If I just wanted pills I would have jumped at the HOLY GRAIL of pill seekers wet dreams. But no I just want something for the pain. I hate taking meds to begin with so anything I do take is because I need it not because I want it.
I am so sorry this is happening to you Susan H. It sounds like your drs are a real problem with no follow up which means you will have to be doing the follow up or locate different drs.
I have found that if I don’t take charge, I don’t get what I need. I think people are too busy, don’t take good records, and lack follow up. My healthcare is up to me sadly.
Had a good day.
Holy Moley!
I am so sorry that you have to go through such insanity. What is breakthrough pain? I have read that a lot on posts, but don't understand as I hurt everyday so badly I can't bear it. I kind of feel like my docs think i am a pill seeker, but honestly I just want help, so I can get off the couch. I have tried exercise, but its only so more worse painwise when I stop. I don't understand how doctors can come up with that you or anyone else is a pill seeker. If they only knew how much pain we have!
Hi Susan,
Wow…what a frustrating experience! My advice…screw the pcp and neurologist…you need a rheumatologist or naturopath doc. I have had AMAZING results taking Lyrica…no more pain since I have been on it. Its worth a try dear!
Huges,
Tracy 
Tylenol becomes toxic after 4000 mg per day, and the damage to your liver can happen suddenly. Don't take that chance!
Could you possibly see a different doctor, maybe one who's a little more compassionate ? Sometimes it takes a long time to find that one doctor who is willing to help us.
I was diagnosed with Raynaud's by the doc looking at it when I was in my teens. He just said it was Raynaud's and that was it. I do my best to keep my hands and feet warm. I looked at your link for Sjogren's and I have some of those symptoms, but not all. My current neurologist also said I have Raynaud's, but he didn't say phenomenon or disease. In fact, he hasn't said anything else about it. He diagnosed me with fibro during my second visit. I have done so much research trying to figure out what is wrong with me bc i know the docs aren't going to help me.
Hello,
Thank you for your reply. I take lyrica 75 mg twice a day, and it helps a smidge, but no where near enough. Could be the dosage. Of course, I don't really know what all is going on with me.
I really really feel for you. I dont know why it seems that many doctors dont seem to understand that we are really in pain. I used to have problems with my Rheumy calling the pharmacy. You have to be assertive and keep calling both and explaining your frustration and the dire state of your situation. I hate to say it but in these circumstances the squeaky wheel gets the grease,
youngone, that is horrible. They are the ones who gave you the drugs. You did not write the scripts. They are responsible.
Jerks.
Not to defend doctors..I have a feeling that some of their seemingly indifferent attitude is because once they hear Fibro, they know it is not an emergency situation. I also think they see lots of people seeking drugs that claim they have Fibro. They would rather let your primary doc help you because they know you better. It does not excuse their behavior, just maybe makes it a bit more understandable. I would rather be home in massive pain then go to the er and be ignored all day long.
I'm sorry for your pain. I have been to er for pain and vertigo and felt like I was dying and all they do is refer me to neurologists that I cannot afford. They give me nothing. There has been times when I have been suicidal from the pain, and the only thing that helps it is to smoke marijuanna. It helps a lot with the pain. It's still there, but it's more bearable. I don't know what to tell you. It sucks. You feel all alone. I hope you feel love and support from this site!!! I hope your doctors get it together for you.
Also, the last time I was at the doctor...they said I probably had a gluten allergy. I have given up gluten(super hard), and the flare ups don't come as often. Maybe you could try it? I just was at the point that I would try anything.
So sorry to hear about your experience. I almost went to ER yesterday; instead I called my chronic pain doc & had to leave a message. Guess what? He never got back to me back even tho I told him I was in excruciating pain. You are right, all they think is that you want more drugs. Well, before I had fibro I never took any meds. The docs are the ones who give the drugs then when u get to a certain level they won’t give u anymore because they tell u that u will become a drug addict. Well who did this to us anyway?
I was on prednisone for awhile but that was for a skin disorder but I had so much energy but u can’t take it too long. I’m thinking abt taking marijuana that would be great if like u said the pain would be more bearable.
On that note I would just like wish everyone a happy & less painful new year. Pray that one day soon this pain will go away so we can go on with our lives.
All I can say is that doc is an as***le!!! And you are really pushing it by taking so much Tylenol (in my humble, non medical opinion). That much Tylenol can wreak havoc on your liver. I stay away from Tylenol because of the effects it can have on your liver. So, how about writing a letter to the doc and ask that it be in your file. Explain in very clear and concise and factual language all disagreements you have with him and the way he noted things in his chart. Keep a copy to take to your new doc(s). I don’t know if it will help but SK mentioned that in a thread a while back. I hope you find a doc to help you out. One other thing- I have noticed that docs respond much better when you are dry and factual about things than if you a emotional and teary eyed and, for lack of a better word, wimpy. I had one doc tell me she could not be my doc if I was going to keep whining. This was after five minutes of her talking and writing things in my chart without looking at me. When she did look up, I had tears in my eyes but I was not whining. Needless to say, I did not do any of the tests that she ordered (which I felt were unnecessary and which no other doc felt were necessary) and never went back. Other people’s experience might be different about that though. Good luck to you. I hope you find some relief.
it's not a surprise, this has happened to you. i wish it wasn't the norm! dr's either think that fibro is not real or they don't know what to do about it. U do need a regular med for it, i was on gabapentin, it's a pain med that is time released. please also try to eat organic, it has made all the difference in the world on my pain. it has been life changing, i think i will be able to work part time in about 6 months. i never thought that would happen again.
I went to the ER once and the nurse asked me if I had had any fever. I said no, that my temp had actually been abnormally low, around 95 degrees. She asked me, very sharply, how do you know? Hello, anybody in there? I put a freaking thermometer in my mouth and read the temp when it beeped. Pain and/ or illness does NOT equal stupidity.