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Beyond upset and stuck in a flare!! (rant)

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Posted 6/13/2011 2:52 PM (GMT 0)
     So my husband is in the army and I have tricare insurance. I have come back to Georgia from California about 2 weeks ago and have had a humidity and heat induced flare every since... So, I have been to my primary care who sent referrals to pain specialist Rheumatologist and behavioral health. She prescribed me percoset and Lyrica, which i told her i couldnt take lyrica due to some side effects. (tried so many cant remember what the side effect was now... memo to keep a book on side effects not just pain).

     I have also been to ER twice in a week with pain so bad i cant walk... they tell me they dont treat chronic pain and give me toradol and send me packing. Toradol worked before, but these last two times i have noticed a bad side effect of muscle tremors all over my body for hours.. it wasnt too terribly bad the first time just annoying and kept me up for a bit , but this last time it was terrible.

     i think our bodies have a way of building sensitivities to drugs and chemicals where its not bad at first but gets really bad the more you use it. shakehead  

     Anyhow, my referral just came back, and i called for a pain appt only to find out that they dont treat fibromyalgia patients. confused confused confused What the heck kind of pain management doesnt treat fibromyalgia, and not have any ideas of doctors that do??? I am so upset and in pain I am ready to give up!

    Thanks all for listening.... i am on here lurking most days... and all the information and shared experiences makes me feel at home with people who understand.

 

Posted 6/13/2011 3:03 PM (GMT 0)
I am so sorry you are having such a terrible time. I thought rheumatologists were fibromyalgia doctors. Strange! I'm in a bad flare, too. Hope you find some relief soon.
Posted 6/13/2011 3:33 PM (GMT 0)
I am sorry to hear your pain problems. I have had tramadol before and I was taking so much of it that it caused a grandmal seizure. Wow, that pain management Dr. Must of had some hard patients. It seem like nothing would take my pain away. I got addicted to opiates and almost lost my life and my family. I do take subutex one tablet a day and that is considered a less addictive drug for me. I do see pain management and he knows my history. I think my chart must be tagged. I know it's for my best, but sometimes I could use a percocet for my out of control pain. I know you must be frustrated with DR's. Because I am. I am a very medical complex pt. and DR's look at me like oh brother. I hope the forum leaders can give you a better answer. Hang in there and don't give up!
Posted 6/13/2011 4:36 PM (GMT 0)
I live in Florida and know all about heat, humidity, and flares.  Summer is my worst time of year for fibro.  I know it so I don't think about it.  I just take one day at a time and, before I know it, the humidity leaves and fall arrives and all is right with the world!  wink   

 

I just keep doing what I do all along.  I do need more ibuprofen and extra strength Tylenol in the summer...I actually end up taking the maximum safe dose of each of these.  Malic acid/magnesium supplements have helped me a lot and so has vitamin D3 supplements.  Things are more bearable with this. 

 

I get up extra early in the summer and walk before the heat and humidity of the day arrives.  The exercise does help with the pain, too.  Also,  you could get a walking-in-place video that will give  you good, gentle exercise too and you can stay in the air conditioning too!  If you sit or lay too long with fibro you will be stiff as a board and have more pain.  In the mornings when I get up, I have to use a cane to walk.  But I keep moving and the cane can be put aside for the day.  If I'm having an especially bad day, I take my cane with me when I walk.  It's collapsible so it's easy to carry.

 

Drink plenty of fluids.  Also, I found that since I started taking more calcium, I don't get muscle cramping.  I'm not sure if this is part of your problem.

 

Above all, keep a positive attitude.  Dwelling on something you can't control only makes you frustrated and miserable and that stress adds more to your pain.  Keep in mind that this period will pass and there will be less pain down the road.  The old one day at a time really helps a lot.  Do things that make you happy and are enjoyable for you, too.  I hope you feel a better soon.

 

Sherrine

Posted 6/13/2011 5:59 PM (GMT 0)
I have been researching hard since I started suffering from this disorder 2 years ago (I have only actually known what it was since Feb.).  I found a lot of "Pain Management Dr's" that won't treat FM patients, esp. with Tricare (I am in the Army).   So, this made me curious and I asked a friend of my wife's family, who is a Dr., about this and she told me though there are a lot of people out there that actually are legitimately suffering, there are also a lot of people that use it to med seek since it is so difficult to accurately diagnose.  To attempt to try to answer your question; after seeing the Rheumatologist if they don't plan to lead your treatment then your PCM will probably be the one to lead your pain management.  Though I have recently requested a Pain Clinic referral I have had my PCM leading my pain management since February, and before that.  Good luck and I hope you find relief! 
Posted 6/13/2011 7:02 PM (GMT 0)
Hi Witchesblew,

You must really be a lurker because I don't recognize the name. I am glad that you have joined in now.

Sherrine is so right when she says that you have to keep moving. I have taken percocet before for pain, and it is really a good pain med. I think that being in a flare is so difficult. But remember, it will pass. Do some gentle stretching (gentle). And maybe take a short walk when you can. I know it seems difficult, and you may only be able to go a short distance, but next time you will be able to go a little farther.

My pain has been worse lately too. I have a shoulder acting up. I had surgery on it before, but this is more in the chest area, so I think I am dealing with a little costochrondritis (sp) right now. It is very aggrivating at the moment. I have always had trouble with my left shoulder ever since the fibro started, but lately it has been especially sore and achey.

Sherrine mentioned drinking water. It is so important to keep hydrated. Our muscles go into a rigomortis state with fibromyalgia. They get stiff, stringy and very sore. Keeping them hydrated really helps. And the magnesium in the malic acid combiination really helps with the muscles too.

I really hope that you feel better soon. Do keep us posted on how you are doing. Take care...

Hugs, Karen

PS I am sorry about the doctor situation. I hope that you can find somebody who can meet your needs.
Posted 6/13/2011 7:22 PM (GMT 0)
Thanks for all your input!!! It is so refreshing t be able to come on here and be with people who understand. After I posted I went out and forced myself to walk around Walmart (the best air conditioned place to walk when its 101 outside). Took my water bottle as I always do, and just ignored the gnawing pain.

1in9 since your army you understand the frustrations... my husband may actually be getting med board retirement for his ptsd, and other physical issues just so that I can get out of this humidity.

Sherinne... Thanks for all of your advice and enouragment...one day will pass and so on till fall arrives!

getting by.... yeah, I have less than 100 posts, but i am here reading everyday. Sometimes my brain is just to foggy to try and write something that is coherent enough to understand!!

I by no means want to be the one who is addicted to opiates, as a matter of fact i dont even take fentanyl anymore cause i am allergic to the adhesives or maybe the fentanyl... i break out in blisters where the adhesive is and my whole body gets itchy and hives. I try to reserve the percoset for really bad days, and stick with the tylenol or advil, but its starting to really do a number to my tummy.....

Thanks again everyone i love that there were so many responses so quick!
Posted 6/13/2011 8:34 PM (GMT 0)
Pain patients rarely become addicted to opiates. Statistically less than 3% do. Those who do become addicts are folks who had previous addictions.

However, even people who have had addictions to alcohol, heroin, etc, can be medicated with opiates for pain while being carefully monitored by their doctors.

Pain is now recognized as a disease and pain management is considered important.

I am not suggesting that you use opiates, I am saying that they are not all evil.

I hope you feel better soon. Some days when in horrible pain, I just stop whatever I am doing, and rest. It can be boring because I have had to do it so often.

There is no such thing as a Fibromyalgia medical practice classification. Rheumatologists do not necessarily know how to treat fibromyalgia. The emerging field of pain management offers us more options.

Find out which doctors specialize in pain management. This might lead you to a physician or nurse practitioner who can assist you.

Donnaeil
Posted 6/13/2011 9:01 PM (GMT 0)
Donnaeil, that's my biggest problem - having to NOT do what I want! Arrrgh! Today I was pushing an empty cart around Target, and I turned a corner and the cart resisted the tiniest bit and - voila - sacroiliac acted up! Laugh or cry?

Witchesblew, I hope you find someone soon to treat you! My doctor is an internist/immunologist. Go figure!

Debbie
Posted 6/13/2011 10:17 PM (GMT 0)
my rheumatologist and primary care doctor said they would prescribe meds for fibromyalgia if I need them.
Posted 6/14/2011 1:10 AM (GMT 0)
Yes Nana,

Your doctor's would provide meds if asked. However, pain management is not only providing medications. It requires a multifaceted approach.

Moreover, not all Rheumies and MDs will treat fibromyalgia. So there is no guarantee of treatment from a specialist. I have had to specifically ask for the doctor who does treat patients who have fibromyalgia.

Donnaeil
Posted 6/14/2011 4:21 AM (GMT 0)
It is not easy to find out what works for each person. There was a time when doctor's believed that patient's did not need pain management and thought it was "all in our heads."

Figuring out a program for pain management for each person will take some time and, may come with complications.

I was doing some research and discovered that doctor's and researcher's failed to tell patients that a 30% reduction in pain is the goal. They know that no matter how hard we work at it, the pain will always be there.

So, if anything you do helps you feel better. You are successful.

Donnaeil
Posted 6/14/2011 11:28 AM (GMT 0)
Donnaeil...30% is all they stride for?? that is a scary thought, but at the same time I can understand cause I think with our pain is so multifaceted that any one drug will not cover it all.

I was let down by the pain management not treating fibrmyalgia it is chronic pain and that is what they treat?!?!?! Went to yet another appt with an dr, not my primary care since she has no openings for 3 months... he asked me what my issue was and implied I was seeking drugs. He refilled my percoset which I told him I didnt need, told me how he had cancer and had to set all of his appts up before he moved and called me irresponsible for not taking more action in my healthcare, and did not even listen when i was trying to ask for trmadol or neurontin instead of the heavy hitters i have now.

Ho hum,,, so i gave in stuck on a fentanyl patch which helped the pain some down to about a 4 on that maic scale they use, but now i have a blister where the adesive was and am itchy all over... if its not one thing its another!

Gentle hugs to all in a flare today!
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