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jmorr posted:
Hello all,
I am new to this whole thing, and was doing some research on webmd and just thought i would come over to this community to see what it is and if i can share my story and also get some support....Currently i am being treated for Degenerative disc disease, RA, just diagnosed with FM, depression, sleep problems.....lalala, anyway, i guess my questions are mostly about pain, and looking for feedback on some of the meds that i am on...my dr started me on a new anti depressent call VIIBRYD 10 mg as i was on paxil but it was making me crazy and aggressive. this new med seems to be more Calmer, for lack of a better way to put it. I am also on meloxicam, allopurinol, hydrocodone, valium 5mg, for sleep, 81mg aspirin daily and i think thats most of my meds....My doc says that the allopurionl will stop the production of uric acid which in turn helps with the arthritis/RA but im scared to take the gabepentin he wants to put me on as the VIIBRYD seems to help with my mood and sleep. Therefore, it seems i can manage the pain better when i get a good nights sleep...i wake with bruises and when you touch me, i bruse. Is that normal? I see my doc every month and he always squeezes the heck out of my arms, legs, head, neck, back etc....and everytime after my appt, i have brusing....but gads, the pain afterwards if incredible....so i am just wondering about anyone elses expeiriences with this and what i can expect....im assuming there is not cure? So i guess my goals are the same as anyone elses....as much excercise as i can handle, eat right and try to get sleep.. Any thoughts would be appreciated......thank-you
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Anon_1149 responded:
Hi jmorr... So sorry you have FM but happy you can join us... We are here for you...

I understand right where you are at... I have multiple problems and some of them are Degenerative bone and disc disease and depression, and sleep problems, and FM, MS, RSD, and now Parkinsons... My FM is in a flare right now which causes pain 24/7... sometimes it lasts a few days and sometimes for me it can go for months...

Yes with better sleep comes better pain management.. With better mood comes a stronger spirit and soul in which to deal with our illnesses... Our flares... and our ability to accept the changes we have to make to live with FM... Stretches and exercise... gentle exercises... are very important... to keep our achy and stiff body moving is very beneficial to us... Rest and relaxation is a great help... Some who can get in the bathtubs take long epson salt and/or bath bead baths to relax... I put peppermint epson salt in a bag in my shower.. and sometines I burn incense during my shower...

I use meditation and hypnosis to relax and deal with the pain... I also am on medication and even tho they are opiates and not suppose to help they do...

Gabapentin never worked for me... but neither did cymbalta and lyrica lol... 2 of the miracle drugs out there lol... It is a trial and error to find what will work for you... What works for one doesn't necessarily work for me...

Checking your vitamin d and 12 might help... We are often low on them and low vitamin d can cause more pain and low vitamin 12 can cause more fatigue... I always have to ask for them to be tested... Mine is within normal ranges but still low so I take a vitamin D and something for energy... can't remember it right off hand... sorry... brain fog is thick today...
There is a Member's toolbox message to the right of this... click on FM TIPS- LIVING W/ FM- TOOLBOX- WELCOME NEWCOMERS... It is under "helpful Tips"... You can find a lot of good information there...

My main force in dealing with FM and all my illnesses... Is acceptance... Accepting me as the new me... Accepting my limitations... Accepting where my FM, MS, RSD, and Parkinsons have me today... It is a daily chore... Sometimes it is minute by minute and second by second... Sometimes it slips my mind and I just take a few steps backward into depression and denial... I am human after all... Everyone gets tired of the pain... tired of watching what might have been and thinking of what we can't do... But thru support you find hopefully with in families and here... You can pull back and start again... This is truly a one day at a time illness... You never know from moment from moment how you will feel and you never know what tomorrow holds... Could be a great day with very little if any pain... Could be not so good... But everyday is an ok day if you can accept what is happening to you... I promise you...

Here you have found family... People who know right where you are and can help you survive... Please voice your needs freely and come often...

take care... love... JAN/DAKOTA
 
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dollbug responded:
Hello and welcome....MiMi in NC....You have found a good FM support group...and I am sure that you will soon find some good tools which might help you cope better with your pain...I have never heard of the VIIBRYD....I hope this helps you though.

I have taken several different kinds of anti depressents but am not on any right now. I went through a period when I could cry at *nothing*...could not even explain why I was doing this...I think it might be a hormone thing...anyway...I have not been taking any prescription medications for some time now...I do have muscle relaxers that I use as I need them.

I have tried different kinds of medicines for the FM pain but did not find anything which helped me without causing side effects...this prompted me to do my own research and with a trial and error process I finally found *vitamins and supplements, along with other things* which help me cope with my FM pain...now if only I could find something to help with the chronic fatigue that I have...

Sleep is a major factor for me as well...when I do not get enough sleep I tend to have more pain to deal with...Stress is also a big factor for me as well.

I would like to encourage you to be sure and ask your doctor to check your Vitamin D level, if you have not already done so....low Vitamin D can cause some of us to have additional pain...(it did for me)..and it can also affect other illnesses as well...(according to the medical researchers)...

I hope you will also check out the info under *tips* and *resources*....as I am sure you will find other good tools that perhaps you have not thought of trying...using a heating pad as needed helps me...along with Stopain Spray as well...taking a hot shower right before going to sleep using lavender bath salts that help relax my body so that I can sleep better is also one of my favorite tools to use....(this is good also especially if I am really tired or have had a bad day)..

We, FMers, know exactly what you are facing each and every day....living with the wrath of the dragon, aka FM..is not easy to do...

I hope you will post often, ask questions, make comments and/or suggestions...hang in here with us...I am sure you will gets lots of support here.

Take care and good luck..


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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jmorr replied to Anon_1149's response:
Hi Anon_1149
Thank-you so much for your kind response. I know that some days are better then others. When i have flare ups, im down for days and its hard....I have 2 beautiful daughters and a grandbaby who is 4 and the joy of my life...I live with my oldest daughter right now and that in itself seems to help with my mood. I work from home and also have been approved for FMLA which if you know what that is, is a godsend. It gives me the ability to work, take the time off i need and not feel like i will lose my job. My work collegues have been most supportive and its an ideal situation....my hope is that by trying to do all i can now, i nip some of my symptoms in the bud before i get really crazy. My mother has really bad RA and FM and I watch her struggle every day with extreme pain and swelling and it scares me to think that one day that could be me......I have a fiesty personality and wont hesitate to tell you like it is and sometimes i think that helps more then anything.....Not to sound rude, but i just think being upfront and speaking your mind alleviates alot of problems, tension, games and whatnot in life.....And after i typed that, i reliazed how that sounded...do not take offense. I did not mean to direct that at you personally..I know what you mean about the opiates but to hell with what people think. I do what works for me and i dont abuse them. I take my meds like im supposed to and sometimes dont even take the pain meds unless i cant stand it. I focus more on my little 4 year old grandbaby. She keeps me busy and focused on what matters. FAMILY!!! Again, thanks for your response and kindness. I hope your day is a great one!
 
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sp2001 replied to jmorr's response:
Hi there, I see you've gotten a lot of good advice! I just wanted to second the checking your vitamin D level. I too was deficient, and take a rx dose (50,000 IU). I have noticed a little difference in general aches lately, so definitely worth it! I also take a B12 supplement, and recommend that too.

As far as bruising, are you anemic? I have days where I feel "bruised all over" too. Couldn't hurt for your Dr. to order blood work right?

Totally agree on telling it like it is! No offense taken LOL I am the same way. I don't have energy to waste! Good for you

Good luck! *hugs*
Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out, shouting 'Holy sht! What a ride!' ~Hunter S. Thompson
 
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jmorr replied to dollbug's response:
Hi Dollbug
Thank-you for responding as well. I am sure that i will find alot of good information on this site as well as feedback from people who live with this condition. I find that talking with people who have similar conditions is the best therapy. Sharing your stories makes it seem like your not alone. Therefore not feeling sorry for yourself...As a person with depression, i was crying at the drop of a hat as well, and it thought to myself, god, quit being such a boob...it was making me crazy, thus the paxil...but quickly learned after about 2 1/2 months on that, that it was making me feel like i was having out of body experiences and just like i wanted to hurt someone....not a feeling i want to have or can afford when im around a 4 year old child. I have checked my vit d levels and they seem to be good. I do take supplements and i drink a ton of milk. I love it....and my bone structure is good and all my levels so far with the exception of my RA level is good. my liver enzyme is a tad bit high, but doc says becuase of the tylenol in the pain med.....which i find odd, i take maybe 1 or 2 a day if at all. and i get 30 10mg's a month. So i am way careful not to take to many of those....the meloxicam and the alluprional seem to alleviate the swelling and inflmation....i was on predisnose, but drs just dont like that drug because of all its side effects, but i swear, that 5 day treatement helped me more than any one thing...if i could be on just that drug, i think i would be good. I have also had my share of cortisone injections in my back, but they have no effect on me now and we have stopped those....so the cocktail of drugs that i am on now seem to be working quite well. Its nice to have the feedback that i have already recd on this site. I will check back often and post even more. Thanks all for your responses and tips. I will take advantage of all that is offered. To all those under the same blanket, hope you feel the warmth and love that you have shown me here today........Thanks so much!!!!!
 
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jmorr replied to sp2001's response:
hi there sp2001
Wow, this site is awesome! lots of support and words of wisdom...people can be so healing. Power to the people!! HAHAH....ye, we have checked if im anemic and my iron is just a tad low, but not enough for dr to be concerned. im just a bruiser i guess. But like i say, some days are better then others. Well, all, you are an inspiration and its time for me to get started for the day. Thank-you all so much for your words. Have a wonderful day
 
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xperky responded:
Welcome jmorr. It's good to hear your new medicine is helping. I also understand your concern with starting another new medicine right away. I prefer to start only one new medicine at a time and see how my body adjusts to it.

As for your bruising, it's possible that's a side effect of the NSAID or aspirin you take. Tell your doctor about it next time.

Sorry to hear about your RA. You don't mention being on any treatment to slow it down, only the pain management part. Do you see a rheumatologist for that? If not, I would recommend that specialist for you.

There is lots of great info here. I hope some of the tips help you feel better!
With Compassion,
Margaret
 
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jmorr replied to xperky's response:
Hi xperky
thanks for your response....my dr is giving me allopurional 300mg 1 daily and instead of aleve or something of that nature, he put me on meloxicam. I only have to take 1 of those instead of the 2 aleve that i was on. ....I used to take the aleve which i thought helped tremondously, but the less pills to take, the better....the allupironal is to slow or stop the production of the uric acid which builds up in the joints...and this my dr has found has helped him...(he is also on it) im hoping that helps with the arthritis/ra...My RA count right now is very low so its not that big of a deal for treatment.....its like at a 16 or 17...he says if it goes over a 20, then we will start to work on that.....i have been seeing this dr for quite some time and i trust him and he is very throrough..he takes the time to explain things to me and i hate to give him up and i wont....so in answer to your questions, no i dont have a rhuemy dr yet.....the Viibryd that i am on seems less harsh then the paxil, and the zoloft that i tried in the past and its a new drug. Just came out in 2011....kinda scares me about new drugs cuz you always hear these ads on TV about new drugs already being taken off the market or the lawyers having cases about them....geez....but like i say, that drug alone helps me to sleep better, which in turn seems to help with my pain.....so, there ya have it.....last night my grandbaby and i went for a walk, and we were running a bit, and i fell.....man, things i used to do even a year ago i find that i cant do now.....its the simple things that catch up to me and that really stinks.....i used to be so active in my younger years always into sports and im thinking that that on top of trying to stay as active now, plus i drink a ton of milk is helping me alot.....my bone structure is pretty strong and i quit smoking in jan of this year.....so i just try to keep my chin up.....that to me is the best medicine......But like i say, dont get me wrong i have some pretty bad days to......welll, thanks again for the reply.....have an awesome day!!
 
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booch007 replied to jmorr's response:
Good morning,

The allopurinol you are taking is for gout.....gouty arthritis, so it seems you have a 2 for 1 issue here. RA has been proven in your labs and you must have had a high uric acid level as well. So this is a challenge for him, good that he watches you closely. I am not sure why he uses a baby aspirin in a female as it has not been proven to help in anyway other then increase risks for bleeding in the face of meloxicam and other meds in this class.

If you have had a heart attack in the past it changes the road a bit. But your bruising for sure is due to this pairing of meds. It is rare to be anemic from the bruising but microscopic bleeding from the gut can cause it. Thinking you are >50's.....is there a stomach protectant in there? Often added to decrease acidity in the gut. Hoping too, that your using enteric coated (orangy looking) tablets that dissolve in the intestines not the stomach. Asa likes an alkaline (low acid) area anyway..
That is why the sell of bufferin (it is buffered to be alkyline) was so big years ago.

Well keep an eye on yourself as well as him......EYES WIDE OPEN is my saying. get educated and keep up with that GB...a 4 year old can be great fun with projects and crafts....a hunt for frogs and so on......great time in life for you.

I didn't see a muscle relaxant in your meds....or what you are using for breakthough pain when you are going to attempt a BIG thing and pain increases? It is tough when there are 3 things going on. I am hopeful you are on a gout diet also...that he has told you how to lessen the uric acid crystals with diet?

All my best, Nancy B
 
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jmorr replied to booch007's response:
good morning nancy
thanks for your post first off... I have been on so many diff meds in the past that i have found what works for me....Im not sure how to take your post. Are you in the healthcare profession? Sorry, im not trying to be rude or disrepectful. I have experimented with all kinds of meds that have either made me sick, didnt work, or just plain crazy.. As far as the aspirin, I have taken aspirin for as long as i can remember. Its not something new i just started. I see my Dr once a month and he watches me like a hawk. Like i say, i wouldnt trade him for anything. I appreciate your comments but i think my dr knows what im dealing with and responds accordingly...as far as a muscle relaxant, i have tried all kinds of those as well. They make me sick. I have tried flexril, soma, some other brand that was so expensive i could only afford 5 at a time and they make me so drowsy...ive tried celebrex and all the known meds, lyrica (which i absolutly hated)...my body does not tolerate meds to well.......so, equally challenging is trying to find the right combo of meds as with anyone. Once again, thanks for your words and i hope you have an awesome day!!!
 
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xperky replied to jmorr's response:
Hi jmorr. Nancy is a nurse and has a vast data bank of meds and the conditions they treat. You will find, over time, that she is always reaching out with a helping hand and she doesn't mean to discourage your faith in your doctor at all. I think she and I picked up on the same concern about you having RA and not getting early treatment for it. I do understand that some of us are very med sensitive though. Not to worry! Happy to have you interacting here.
With Compassion,
Margaret
 
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booch007 replied to xperky's response:
In no way am I disrespecting your physician or your strong relationship with him.

When you choose meds for a patient or (the patient choses the med and you follow) there is always a risk/ benefit thought that plays in there.

If bruising is now showing up at every turn or you see a change in yourself...the meloxicam is the culprit with the Asa that is the probable cause. You then have to say....is the benefit of the asa worth it? Asa confuses platelets for 1 week after dosing, so until new ones are made by your bones.....those are dysfunctional and the cadence of events to make a clot are altered. Hence you bleed/bruise. Now not all platelets get into trouble and we have found that low dose does just as good as adult at points in time.

Maybe the anti-inflamatory help of baby asa is helping the arthritis for you as well...I am not as strong in this area, but the bleeding you broguht up. xperky and I saw it right away...these two guys potentiate the risks. That's all I am saying.

I bow my head, it truly is in care that I speak. Eyes wide open is so very important for patients today. Polypharmacy can be so dangerous. Just be careful...there were studies done where people were found to have an antibody to asa and it did them no good at all to take it. Everyone is different. I just don't want you to suddenly have a big bleed when less could have been more at this point.

Good luck with this problem I hope you don't look like WWII or an abused female......I have seen patients that look awful, and again we assess risk and benefit.

Take care, Nancy B
 
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jmorr replied to booch007's response:
hi nancy
Or should i say Nurse Nancy...Hope you dont mind my attempt at being either funny or humble.

I did not know you were a nurse and i feel abit better about what you said on your post. It seems i have bruised and for the longest time, i only took small doses of aspirin as that seemed to ease all my symptoms.....It took me a long time to find this dr and some drs just wanted to not even treat me as it was all in my head....I just feel that if i was at any risk for anything, my dr would tell me.....you could look at me and i bruise....but, i never associated it with aspirin or the meloxicam....next time i go see him which will be the 20th on this month, i will ask him about that...its just i hate to give up stuff that works and try something else....im so sick of trying meds..i just dont want to take anything......and yes risk of all meds is out there so like you say.....you just pick the lesser of 2 evils. Sometimes the lesser of 6.....Well thanks for your concern and the knowledge....i thank you for it...have an awesome day
 
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jmorr replied to xperky's response:
Hi xperky
yes, maybe im a little defensive when it comes to drs, meds and illness.. Everyone likes to think they are in control. And when your body says otherwise, you dont want to believe it...I have been of the notion that im in charge of my own healthcare. I decide what i will and wont do.. and there are certain things im not willing to do. Maybe that will be by downfall...I refuse to grow old.. And i refuse to give up and sink my ship...(my Body) Just like i told my kids, once you have to start changing MY diapers, put me down...I dont want to be anyones burden and i want to leave with some dignity and some of my faculties..I may not get that choice, but by god, i will go fighting.....Thanks all your posts...have an awesome day


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