Hi all, I haven’t been on for awhile, been busy. Well, pour not so nice friend fibro is being not so nice. I haven’t been comfortable for a while now. I was going to the doc every month and then finally got it to where I could manage and that only lasted about a month. I did not however go back to the docs as we all know we flair. I got worse around Halloween and never really recovered and then thanksgiving whopped my but, I made 30 pound of mashed potatoes for hubby’s work plus extras and then of course my own thanksgiving dinner the following day. My husband saw how bad I was this weekend and it brought the subject up again. We have talked a little before about me going off my fibro meds. I suggested it to the doc before and she advised against it however it’s been so long with meds I don’t even know how I would feel without them. Right now my monthly meds are over $100 which is a lot. So now some info. I am currently on gabapentin, savella, vitamin d, dulera, meteprolol, and sanctura. I also take quite a bit of ibuprofen for my pain. My illness list has grown and my hubby and I think some of it might be from the meds. I have fibro, of course, herniated t11-12 space, asthma, intercystal cicytis, and now idiopathic tachycardia. I have dry skin, eyes and mouth from one of my meds. I have tried pt and been on lots of different mads, including lyrica. In your opinion should I try going off my fibro meds? If they are not actually helping it’s like I’m throwing money in the trash and putting a bunch of crap in my body I don’t need. I do have a doc apt next week just to let you know. Thanks so much. Rebecca
Sorry, also while my fibro is flailed currently it has been my back that has been causing me the most problems. I think my back and my fibro are 2 seperate issues. I can move and it hurts so bad I cannot move. Thanks again
Hello Rebecca,
Long time no see, girlfriend! Sorry to hear that you are not in better shape after all of the Doctoring!
I think it' may be difficult to give up the Gaba with herniated discs, but really only you will know for sure, and if you do decide to give that a try, you should be weaned off it slowly, by your prescribing Doctor, otherwise you are putting yourself in unneeded danger, and some nasty side effects.
I have to have my blood work done on a regular basis, and it is NOT for all of the really expensive, or even the narcotics that I have to resort to, it is because the med that helps me the most is an anti-inflammatory, very much like ibuprophen.
http://www.drugs.com/pro/oxaprozin.html
These type of drugs can be very damaging to kidneys and liver, so please watch your dosage,and be very sure to let your Doctors (all of them) know how much of this you take in a day, week, month! It's very important! I was over the limit, and the Rheum cut me back!
I have taken Savella, and I know that it has helped many people, but it can also have some nasty side effects, so you may want to ask about that and do some research. Here are some basics:
http://www.drugs.com/sfx/savella-side-effects.html
That is another that you need to be under a Doctor's care to discontinue, as it has to also be done gradually. The other meds, I have no experience with.
As you surely know, I am NOT a Physician, so I can only tell you what works for me, and pass on some of the things I have learned first hand from my Rheum who is also a Univ Professor. Please talk to your Doctor about your feelings on this matter, they may have more solutions than you may think. Start a running list, so that you don't go forgetting something.
As always, Wishing you well,
SK
Rebecca, it doesn’t look like you take anything for the pain ? Most of us with fibro need more than ibuprofen & , I have a pain patch ( from pain dr) & still take Tylenol & ibuprofen & naproxen over the counter and still have alot of pain, I also take Savella , can you see a pain dr ? I know adding another med is not what you want, but the Gabapentin & Savella may not be enough. The Savella helps with the emotional part of fibro , but doesn’t give good pain management , atleast this is been my experience
I have tried to go off Savella & , I felt worse with out it, however I know sometimes we have to switch our meds to get some relief…Iv actually been wondering if its not helping anymore either, in that case my dr said I could change it to Cymbalta … It’s all trial & error
Have you ever tried taking magnesium ? It helps me alot !
Talk to your dr about it
of all your meds the Gabapentin & Savella are the only two for fibro, did you notice that the Gabapentin helped ? There have been alot of discussions about that med as well as Savella , you can look through old discussions at the top of the page under all discussions
I could never take the Gabapentin it caused horrible headaches,
The Savella has really helped me with mood & fatigue, atleast until now, but like you , it feels like its not working, but when I cut the dose inhalf for a few days I feel worse, it’s hard to know if it’s withdrawal or if it was really helping…
I hope you can find what works for you, Tramadol is another med that may help ,( and most dr are comfortable giving this out) some get relief with it some don’t …
Also you said your back issue is separate from fibro, but fibro does cause alot of back pain, I know if I sit in the wrong position for to long my back is killing me … Actually even trying to make my bed or empty the dishwasher all causes back pain …
Hugs & blessings
dee B
My GP is always telling me that I need surgery, however my Rheum said that my problem is NOT structural at this time. The reason behind this thinking is that I hurt about the same no matter what position I am in, although bending, and car riding are the exception, so there IS some structural cause, but in general, I get the MOST relief from the anti-inflammatory meds, the ones like Ibuprohpen, so this indicated to him that my pain is inflammation. Now this will surely change, and is surely changing as we write, but this lets him know that it's the disease
But it sounds like yours IS structural! It may be time to see a good Neurosurgeon, see what they have to say about this!
Just a thought! Hope you can get some answers, and certainly some substantial relief!
With love,
Susan
My Rheum told me that my Psoriatic Arthritis chronic pain most likely CAUSED my Fibro!
Thanks so much both of you. I defiantly do try to watch how much ibuprofen I take. I have Vicodin when it gets really bad but i can’t really function on it. It’s always a toss up weather or not to take it cause it can make me sick. I have tried cymbalta with no result. Tramadol makes me sick. I’ve been to 3 pain docs over the years the last one just end of last year with no help. I was just on the savella and had my fibro under control for about a year when it finally seamed to stop working and then I got switched to the gabapentin which worked for a little while then my new doc decided to double team those two since the savella helped in the past. Docs say no but hubby and I think the heart problem is from the savella. The same sort of thing happened the last time I was on it. It’s hard trying to figure out what to do. I’ve had docs tell me my herniated disc does cause me pain and I’ve had others tell me it doesn’t. The only thing that is for sure is they won’t touch it unless it gets really bad, like paralyzed bad. We’ll, I’m off to bed thanks for all the advice.
Becca
I absolutely cannot take Codeine, and to take Morphine, I have to take Phenergan 30-60 minutes before, or I'm sick as a dog. If you get a shot of Demerol, it already has Phenergan in it, so there is no question that it works. If I have surgery of anykind, I get horribly sick from the Anesthetic, so I always tell them that I HAVE to have it,and will ;NOT allow them to knock me out until they give it to me!
http://drugs.emedtv.com/phenergan/phenergan-for-nausea.html and it is available in generic.
Have you tried anything besides Vicodin?
Quite a few actually. Most of which makes me sick. I used to be able to take vicodine and be ok but everything keeps changing. Sometimes it does still work and sometimes I end up laying down in the floor. For whatever reason I always end up on the floor. It’s like my brain is telling me to go there because its the lowest place I can get. Lol. I seam to be very sensitive to meds
Hi Rebecca, I'm sorry things aren't going well for you!! gabapentin really messed me up and can have a nasty withdrawal even from low doses. Only last a couple weeks to a month, but in my personal opinion it's worth going off of. You have a lot of other things going on, so personally I'd be careful of which meds are for what. Though, if nothing else after a month or so (after you've had enough time for any withdrawals to wear off) it could be good to see if they are even helping. I can't seem to find the blog - but I remember finding a blog that talked about how the meds for Fibro can make you just as miserable just in a different way. I'm one that if I'm going to be miserable, I'd rather it be nature versus synthetic. Does that make sense?
Well I hope you feel better and that you get some good answers soon!!
Warm, gentle hugs!
Butterflydragon
Hi Rebecca, please just don't stop taking your medication without talking to your doctor, you are on heart meds, asthma meds, pain meds, it is unwise to just stop taking them you may gradually able to go off some of them but you do need your doctor's advice explain to her your concerns I'm sure she will understand or change to generic they can save a lot of money I'm sure you will be able to work something out but keeping you safe is the 1st concern Warm Hugs Jeannie
Hello Jeannie
This was very good advice you gave to Rebecca. There are so many things about our medications that we know nothing about it is dangerous to just stop taking some med on your own.
Gentle hugs
Rachel
Hello Rachel, how are you I hope you had a nice thanksgiving it's such a lot of work just before Xmas especially if you aren't at your best. I was quiet concerned about rebecca health to stop taking heart and asthma medications is very dangerous I do hope she talks to her doctor and try and work something out Warm Hugs
We’ll I’ve been to a few surgeons and pretty much all of them say they won’t touch my disc because where it is located is up higher where my rib are and they would have to go in through the front and it would be major surgery. The last guy I went to see was a major prick who didn’t believe in fibro and caught my hubby and I so off gaurd by even how he said it it was reduculas. Sorr I can’t spell and that looks way wrong. I ended up crying through almost the whole apt and later called my docs office and talked to the one nurse, whose sister also has fibro, and told them about him and to makes sure they didn’t send any more fibro patients there. He was horrible. Thanks again.
Becca
Okay, so being honest I am overweight. I lost almost 50 pounds but when I started the gabapentin it became a loosing battle. I have weigh ins that I can track right up to the start of the gabapentin. Besides that I don’t really have any side effects from it, however the weight gain is defanatly enough, I now look like I’m pregnant, and while everyone else keeps telling me I don’t I know I do and some random person made a comment about how lucky I was to have 2 beautiful girls and one on the way. At least it made me laugh. Lol
I wasn’t planning on stopping all my meds and I will defanatly be doing it with the help of my doc if I do. I plan on staying on my asthma meds and probably my heart meds till I see if the tachycardia stops when the savella does. I go to the docs next week and hopefully my hubby comes with me cause he doesn’t get toung tied like I do. He also thinks of things I don’t. Thanks for the advice. Hugs. Becca
Yeah, the weight thing can be such a killer! I lost like 60 pounds - had another baby and my health crashed BIG time. I've been able - mainly because of the thyroid medication, I think - to lose a little of it again, but still have a ways to go. Heck, I looked less pregnant when I actually was pregnant. LOL =/ Well, for what it's worth it's good it made you laugh! Better than feeling the need to burst into tears!!
Hope you're doing better today!!
Take Care,
Butterflydragon
Hi,
I also have herniated discs and for now I use Lidoderm patches, Tramadol 100mg (up to 4x a day), Oxycodone (when its really bad). I cannot take any anti-depressants because they all give me bad migraines. I started Gabapentin but then heard it puts on alot of weight. I am already little overweight and don't want to gain more so I stopped it. I cannot take Savella or Lyrica due to side effects also.
I started taking LDN four days ago and it seems to be helping with sleep and my head feels clearer.
I also have chronic cystitis bordering on IC...what do you take for this? I used to take Elmiron but then my liver counts went up and my doctor told me to stop it. Now when I have a flare, they give me Macrobid.
I also use a relaxation tape every night and this helps relax me and puts me to sleep.
I use to go to a massage therapist who specializes in Fibro (she is a retired nurse) but it got too expensive.
It stinks when you don't have the money to contribute toward your health! These damn conditions cost me my job and livelihood...I understand.
I do have ic and that’s what the sanctura is for. I do have side effects from it but nothing to dire. I have dry eyes and have to use eye drops and I have cotton mouth alot but I just chew gum to help with that. My pharmacy did change manufactures and now I pee weird. It’s like it doesn’t all want to come out and can some times take me a little time to get it all out but it’s better than having that pain and peeing all the time. Good luck to you.
Becca