I could sure use some advice concerning meds being changed.

[kiddthekatt]

Hi all;
   I'm new here, joined several days ago. I had an appointment with my Rheumy last Wed. and I told him that the Tramadol just wasn't doing any good against the pain. He changed my meds and put me on Ultram ER. I went into a flare Thursday night and it's still out of this world. I can barely stand to have my clothes touch my skin, and I have such severe knots in my muscles that it hurts to touch me anywhere on my body.
    Since I was diagnosed almost 6 months ago my pain has increased so much. I've tried exercise,( I can barely get out of bed the next morning, we have a pool so I try to swim at least an hour a day. The last couple of days the water feels like it stripping the skin from my body. I have to wear my perscription shades at all times now because the light blinds me.
    I had such a horrible night last night,( I take Restoril to help me sleep) I almost crawled to the bathroom and found the Lorcet 10/650s that I had left over from my knee replacement. In about an hour I started feeling a little relief. I dosed off and on for the rest of the night. I took another Lorcet this morning and I can actually get up and walk around today.
    Is this a medication that I should ask my Rheumy about? I know that doctors today have a thing about prescribing opiates, but this pain is more than I can stand at times. Do I need to ask my Rheumy for a referral to see a pain management doctor, or should I contact one myself? We have fantastic ppo insurance and I don't have to be referred to see a specialist.
    Thank you all for listening and thank you in advance for any advice.


gentle hugs
Angel

[Humminbyrd]

Wow, you are in a severe flareup.  I would definitely go to a "pain management doc".  I did that and it helped.  I also went to a "Chronic Condition Self Management Course".  That, more than anything helped me a lot.  

Exercise is a good thing.  I could not get along without it.  However, you must start small, very small and keep at it.  Stretching in bed before you get up is also good.  You will need some really good advice on what to do.  Mind you, everyone seems to want you to do more than you can.  Only you can really tell what is working for you.  One of the really useful things that I learned at the course was "progressive relaxation and meditation".  I also went to a Chinese doc.  She told me to eat barely soup.  It really helps with inflammation.  I make a big pot.  Eat it for lunch and dinner then lunch for a couple days then freeze it for "a quick fix".  She also told me to eat very, very little bread and cheese; eat few fresh fruits and veggies except mandarines and bananas.  You should also eat the bananas only when ripe.  She told me that FMS people have "cold stomachs" and that their stomachs cannot cook their food.  She told me I should only eat lots of fresh fruits and veggies when the weather is hot.  She told me to "steam all fresh fruits and veggies" when the weather is not hot.

The docs do not like to prescribe opiates, but severe pain like you have requires severe measures.  Perhaps they could be worked into a treatment regime.   The cramps might respond to magnesium: in the morning before breakfast and at night before bed.  Take them on an empty stomach.  You might also try boiled eggs.  My Mom, who also has FMS told me to eat boiled eggs for leg cramps.  They seem to help.  Maybe its the sulfur in them.  All of these things seem to help a wee bit.  Put altogether they help a lot.  I put these things together over a period of 15 years and have been rewarded with my life back.  If nothing else all these things keep you busy while you are suffering.  The trick is to reduce the level of suffering until life is good again.  You are always treading fine lines and you will often despair.  This is normal for "chronic pain sufferers.  Hang in there.  A good day will show up and will you appreciate that day.  It will be an unbelievable feast after a long famine.

I don't know what you are going to do about the extremely sensitive skin.  I never experienced it to the extent that you have it.  I do have sensitive eyes with regards to light.  I wear really good progressive lenses.

I wish you all the best.

[hatgal]

Hi Again - I am lucky - surgery corrected my major problem but now I do have hip issues that are pretty bad; I have to get an xray to see if that is degenerating as well (I think it is).  However, when I look back on that so horrendous pain and think that you all live with it everyday with no relief in sight, I feel so awful for you.  I could barely get out of bed in the morning, physically and mentally to get my kids off to school; my husband was useless, as I said, he NEVER understood what I wsa going through and NEVER ONCE helped me with the kids in the morning or any other time for that matter.  As I said, when people don't understand, it makes all the worse.  On top of that, my husband could NEVER defend my pain to anyone because he refused to understand himself; so alot of family/friend relations have been destroyed. My husband's family almost had a "pain med" intervention for me - can ya believe that one??!!!  I was all alone -  completely.  However, my 16 year old was there for me; for some reason, she knew and she eventually was home-schooled because she felt so responsible to take care of me and the baby.  Now my husband wonders what is wrong with her!!!!!!!  I so wish you all well with pain and with people that don't understand.  IT's like getting slapped in the face over and over again.  Be well....... Elizabeth

[PlateletGal]

"I have a very hard time being in pain and not being able to do what I used too, it has effected me physically and mentally"

It does wear you down and you constantly have to remind yourself that you have to be strong. It also can have a negative effect on your self-esteem. I will meditate often and think of the times when I felt good and focus on those times.

Best,

PlateletGal

[here4theinfo]

Wow!! All of your symptoms are like mine...DDD, recurrent cysts, herniated back, several tears and bulges in my neck, my knees lock up to where I cant walk, Ic irriatable bowel syndrome, arthritis in back and joints..My hips are now giving me so many problems that I cant even walk in the mrning without my medicine, my joints ache constantly, my muscles spasm and get knotted easely, I have Endo, I get infections all the time, its like never ending, headaches all the time. When my doctors ask where my pain is I just laugh and say everywhere..The worst part is that I get immune to my pain medication quickly, I currently have Oxy 80, there not working, the doc gave me cymbalta and lyrica and something for headaches and somes. I usually take the pain meds, the lyrica makes me super tired, and I take the somas when my muscles have had it. My doc and I agree that Im broken without answers..I go see him tomorrow again because my meds arent working wnough..Its hard to be in pain all the time and still ry to function normally with kids and hubby..They are very understanding and helpful... It took awhile, a couple years to make them understand that my pain is everyday. Good luck to all of you, Im going to try to go to my doctor tomorrow without taking my meds so he can see how bad everything is, luckily I have a good doctr too. Stay strong and make sure to find a way to release some of your pain through something peaceful for yourself, and try to help your spuses understand, it really helps when everyone is supportave, and you get your time because if your like me, I have a very hard time being in pain and not being able to do what I used too, it has effected me physically and mentally..

[hatgal]

NEVER assume that the doctors are really reading your charts - they are NOT.  If they were to be sued, then they would read your charts.  Also, I took Ultram while on Zoloft many years ago and no one ever told me not to.  In any event, if it is not working for you (the Ultram), then you need a switch.  I was on zoloft for many years; my gyno changed me over to Lexapro back in February and I have noticed a much greater improvement with my symptoms for which that is taken than the zoloft.  Please be well and be your own advocate for your health - do not leave it in the hands of doctors or the like.  Best.......... Elizabeth

[kiddthekatt]

Thank you both for your replies. I'm going to start in the morning by calling the Rheumy and telling him that the Ultram ER is not working  The pharmacist called me earlier and told me to make sure I called my internist tomorrow morning because The Zoloft and the Ultram can not be taken together.
    She scared me to death and I promised her that I would not take the Ultram until I called my internist. I asked her if I could take the Lorcet 10/650 with the Zoloft and she said that I could.
   My internist knows that the Zoloft has been a Godsend for me, so the two of them need to get it together and get my meds straight or I'll take control of my health and well being and start calling other doctors.
   The two of them were supposed to have been keeping up with my charts, evidently one of them screwed up. Thank you again for your replies.

gentle hugs
Angel

[hatgal]

I agree with the above post regarding doctors.  You must find one or several that believe you!  I don't have fibro but many, many back problems that caused pain in my legs much like fibro I imagine.  This pain was, lucky for me, corrected with lumbar decompression surgery.  However, I went through hell with doctors in the pain clinic I was doctoring in for over a year.  You see, I had neck disc replacement with fusion surgery with that following PT and lingering very bad pain for some time; then had a MAJOR gyno flare up that ended in disease and cysts everywhere followed by a complete hysto.  Then, after hysto, I had to wait three months to have the lumbar surgery.  During this entire time - about 1.5 years, my pain center doctors NEVER believed in me - they thought I was pill-seeking.  I followed ALL of their protocol:  if we give you something and it doesn't help, call and come back and to never take more med than prescribed.  I played this merry go round game for this long and NEVER once did they believe me; they just kept saying I had to have surgery and NEVER once understood that yes, I knew I had to have another surgery but had to wait out months after every surgery until they got it right.  I was in pure agony and getting down to Rush in Chicago was no easy task.  On top of this, my husband was useless, never took me to my appointments and sided with the doctors that if they say what they gave me should work, then it's all in my head (lyrica was a nightmare for me).  These were two of the docs in that office; sitting there one day in the waiting room I heard glorious comments about one of the other doctors, but I could never get in to see him; these people were actually functioning with their pain.  After my surgery, they were so mean to me, wanted to commit me to a quick-withdrawal program, etc.  I have DDD and although I am much, much, much better since the last surgery, I now have problems from it in my back and hip (the hip is now degenerating).  They NEVER once listened to me; I am now at a pain center that is very compassionate and understanding.  In fact, while I'm having PT, I must still be on meds and what I was taking just wasn't working for me.  I went there last week and they changed them and listened to me - what a relief!  Although my neurosurgeon at Rush is a God-send, the pain center doctors and staff (at least the ones I saw) were the most rude, uncaring people I have ever met.  So keep looking for that doctor(s) that for one, read your chart and history, and really care about you and what you need to do on a daily basis.  These idiots I saw did not care that i had three small children to deal with, a husband that couldn't care less, no family/friends to help, and a 16 year old that took the slack for everything until I was well again. Also, family/friends do not understand pain if they don't have it; no one can understand your kind of pain and none understood my kind.  Best to you on finding that right set of doctors.   Elizabeth

[karen717]

I have a wonderful doctor who really listens to me. I am so lucky. He is not one that is concerned about meds. He says he knows his long time patients and if they need meds, he will perscribe them. I have had fibro for 9+yrs and counting. I have run the course with meds. I used to take tramadol and ultram (not ER). I told the dr. it was like popping a tic tac. I couldn't tell it did anything at all. My dr. keeps me a current scrip of hydrocodone 10/500 to take when I need them. He knows I don't abuse them. But like I said, I'm lucky to have him. I also take flexeril (3 at night), cymbalta, provigil for energy, and skelaxin. I tried Lyrica twice, but cannot take the side effects I was having although it did help some with the pain. My Rheumy on the other hand was not at all what I want in a dr. She would very lightly touch a trigger point and ask if that hurts. She was doing nothing for me, so I quit going to her. My pcp does everything for me.
I would say if you believe your Rheumy won't do anything else for you then you need to go to a pain specialist. I would probably go through my Rheumy is you don't believe this will be a problem. The more drs. you have working together, the better. But you can go on your own. You should NOT be in that much pain. With fibro, the pain is never gone, but it can be reduced. You deserve that much. With fibro, you must have drs. who will listen to you and believe you! Good luck and keep me posted on how it goes.
Karen