Just venting - Running out of med options

[dbab]

My doc is thinking that I have fibro as an added dx to my list after not being able to explain my pain unrelated to my lupus or sjogren's (my inflammation markers have been normal) as she explains it and my tenderness and I have some tender points.  She is prescribing me Cymbalta.  I couldn't stay on the Tramadol so that isn't even an option.  I feel like she is just grasping at straws.  I did try taking Cymbalta and I don't think I can take it.  It made me very ill and very sleepy and that was just the starting dose (30mg).  I'm not sure if I can function on this medication.  I tried Lyrica for my PN and even Neurotonin a long time ago and couldn't handle those.  I just don't know why I cannot tolerate most meds anymore.  Funny thing is, I did really well and tolerated Methotrexate no problem (just can't take it because it lowered my blood counts).

I just don't know what to do anymore.  She doesn't want to up my Pred just for maintenance and I dont want her to either.  I'm maxing out on Plaq and NSAIDs.  I'm just at a loss. 

[Jellyb]

Hi there, i just read your post and you sound so sad and frusterated. I am so sorry that you are having so much trouble with you medications. I do not know very much about your meds but maybe there is a way to get a second opinion or even question someone in pharmacy. The pharmacy people sometimes know more than the doctors do. I wish i could be more helpful. I am sending good thoughts your way:-)

[dbab]

Thank you Jellyb, yes I guess I'm just very frustrated and feeling hopeless.  My doctor seems like she doesn't have any answers for me and it scares me because if she doesn't then I'm in trouble.  I've been with her for 3 or 4 years but may need a change.  I may need to try a new pharmacy also because mine seems to always refer me back to the doctor or they don't have time anymore.  Thanks again Jellyb... it's nice to know someone out there cares

[Joe S.]

I know that this would be a last resort for you but you could try some of the alternatives that I am on.

[Jellyb]

Dbab, i think that joe seems to have a lot of good alternative medicine ideas.
And i have been seeing a nutritionist/ naturopath for help with diet ect. Maybe there is someone in your area that could run a nutritional profile on you and give you some help with supplements geared just for your specific needs. I am still sending you  good thoughts:-)

[dbab]

Thanks Joe, I may consider those alternative options.  I'll definitely look into those.  Thanks again for the good thoughts Jellyb. 

[warmwaters]

Not that it helps, but you're not the only one who has problems with some of these meds. This has been my year of "trying meds to help with pain", and some of the ones that I came off of within a few days were Cymbalta, Lyrica, a couple of different sleeping pills, and a couple of SSRIs.  In each case, it was matter of the side effects being so bad, I couldn't use them. I seem to get very woozy, "drugged out" and even "trippy" on a lot of these mind altering drugs. So you are not alone.

Ooh - that sounds worse when I say it that way - last 9 months have been trying drugs that don't work for me!  Yikes!

A couple of things that have helped - Wellbutrin - it's an antidepressant that works in a very different way than the others - the only antidepressant that I can tolerate. It can also be stimulating, so if you are dragging, it may give you a little bit of energy (Don't know if antidepressant is relevant for for you, I'm not advocating for it, just reporting!) I am no longer on it though, because of all of the experiments above! And I'm now taking a tiny amount of dexedrine, a stimulant, which seems to help a bit with the cognitive fog a bit. Doesn't help with pain. Also, for pain, my dr. gives me Mobic, which was a big improvement over the other NSAIDs I had. I have a lot less pain on it than I did with ibuprofin. The doctor calls it her "miracle drug", which suggests she's had good luck.

Hope you find something that helps.

[dbab]

Thanks warmwaters.  She also did order a sleep study for me which I'm not even sure about doing or not.  What does that tell you?  I thought that only addressed sleep apnea stuff but she said its to test for fibro/cfs or even if there is a problem with possible restless leg syndrome.  I think I will hold off on any new meds until I either a/take the sleep study -or- b/see a new doc -or- c/all of the above.  My husband is not happy with my med collection... I can't say I blame him, it's getting out of hand.  You'd think I'd be on cloud 9 with all the stuff I got for relief but I feel miserable as ever.

[tedebear710]

Hi dbab, I'm so sorry you are not getting any relief from your meds, especially since you can't take many that are prescribed for FM/rheumatic diseases.  You may have already tried it, but there is another FM med called Savella.  This is an excerpt from the NIH site:  "Milnacipran is used to treat fibromyalgia (a long-lasting condition that may cause pain, muscle stiffness and tenderness, tiredness, and difficulty falling asleep or staying asleep). Milnacipran is in a class of medications called selective serotonin and norepinephrine reuptake inhibitors (SNRIs)."  More info can be found at http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000495/.   It doesn't list drowsiness as a side effect, but of course the list of others is long.  (Why can't they come up with drugs without side effects???)   I had no relief with Cymbalta or any antidepressants.  Lyrica's side effects were too much for me, particularly extreme vertigo.  I've been on Tramadol for over 10 years and just weaned off it, as it wasn't doing much.

I also have PN and tried Neurontin.  Even on a high dose it didn't work for me.  My Neuro tried another anticonvulsant called Lamictal.  I'm currently taking 100 mg. twice a day, and it does help.  It's also available in generic so not so expensive.  I have had NO side effects from it. 

Just trying to give you some other ideas...I hope you find something soon that will give you pain relief.  Believe me, it is NO fun.  Maybe if doctors experienced what we do for even a week or two, they'd be more compassionate and pro-active in finding effective treatment.

Hugs,
Tede

[dbab]

Thanks Tede, its nice to know I'm not alone.  I'm just sorry you have to deal with it also.  I agree that doctors cannot truly appreciate it since they don't go through it.  I do believe there are doctors out there though that are compassionate and truly want to help instead of treating you like a number (I had one once), maybe I'll find one again.

[susanep]

I know I depend on my pharmacist a lot, but we have a good one. I hope things get better for you. It does get frustrating.

susanep 

[dbab]

Thanks susanep.  My pharmacy is super busy on a very busy intersection and usually have no less than 4 people sitting waiting at a time so I can see why they don't have time or why it is easier to just send me over to the doctor.  It was nicer when they were open 24 hours, I would sometimes go there or could call at late hours and ask questions with no problems... now, not so much.

[dbab]

Her nurse called me today and says that she was told to call me that I need to schedule a salivary gland biopsy... WHAT???  I have no idea where that came from.  Where's my hole to crawl in and hide?