87 replies to this topic

[rasrob]

Well, slightly better, but still pretty bumpy. I am going to see if I can take a reduction in teaching these great and incredibly challenging students. I figured out how low I can go and still make enough money to live on. I have decided to try this for this school year in an effort to get some space and to do other things to take care of myself. I will know after Thursday how this will work or if it will work.

 

This is my step to get my feet back under me. I can tell the fibro is flaring with the immense stress. Still not as painful as it once was, but I won't go back on cymbalta for it. All of the changes and losses just combined this fall and wham! I am hoping the FMLA will protect my full time status for next year. I need to have some time and space to bounce back for the rest of the day with these kiddos.

 

We'll see....

[lady2882Nancy]

Hi Rasrob

 

That you can work at all impresses the heck out of me as I am still unable to work. I hope that it all goes well for you and they give you this time that you need.

 

I guess it just takes time to get back in shape after Crapalta. I think sometimes I am too hard on myself and that I just need to give it more time and I will do better. At least that is the hope at this time lol.

 

Take care of you

[rasrob]

Has anyone heard of Effexor? Doc suggested it when I said no more Cymbalta.

[thismoment]

It's Venlafaxine, another SNRI, which is what Cymbalta is. Withdrawal symptoms are similar to Cymbalta, including the following from Wikipedia: "sensory disturbances" (brain zaps), anorexia, anxiety, confusion, impaired coodination, diarrhea, dizziness, dry mouth, dysphoric mood, fatigue, headache, hypomania, insomnia, nausea, nervousness, nightmares, somnolence, sweating, tremor, vertigo and vomiting. 

[fishinghat]

Thismoment hit it on tyhe head. Might as well stay on Cymbalta. If you feel that you need a replacement look at an ssro with a longer half life than cymbalta. The longer the half life the less severe the withdrawal. Ssris like prozac, lexapro or zoloft are good choices.

[rasrob]

Thanks for the info...not a lot of great choice it seems. Another one for fibro is Savella, also an SNRI.

I will ask about the SSRIs and see what happens. I am on short leave, but doc is not willing to think about disability leave. I will need to go back on a med and see if I can last the school year. Then adjust work load next year....

 

So close to retirement too! Just a few more years....

[rasrob]

Has anyone else encountered resistance on doc's part to disability? It is only an insurance policy my district has for employees and I can go back later if I feel well enough.

 

No meds yet though!

[thatstheoldme]

.. 

[navywife43]

I am 6 weeks out of no cymbalta and I am still having some issues. I was put on Effexor and I was so sick and had very high b/p. I am now on Celexa and I don't think my body likes this one either! I will be so glad when I am off all of these medications!! I am still dealing with stomach issues and feeling off balance...I wish this would all go away!!!

[thismoment]

Navywife43. After 6 weeks I was still struggling with symptoms too. "I will be glad when I am off all of these medications!!" Good attitude! 

 

The fact that you still have symptoms after 6 weeks is not uncommon. Try not to put time constraints on your recovery- it takes the time it takes. Often it takes some months.

 

If the symptoms are unbearable, of course, get some assistance.  But if the symptoms are bearable (even after 6 weeks), it is now a waiting game as things slowly improve.   

 

Here's where your pro-active attitude can help. Get back to living as much as you can, work, play, exercise, travel, love, indulge yourself, eat healthy. Get distracted and take stock not every minute, but maybe once a day- maybe once a week.

 

You will slowly and steadily improve. Best wishes!

[rasrob]

Great advice thismoment!

 

When I got off of Cymbalta, numerous folks said maybe I need to get back on it. But, people here supported me through the adjusting period. I had been on it for 5 years. But even though I am still adjusting-it is better each week. I try to find 2 good things a day and my part in them.

 

I also found an amazing nutritionist that is supportive of staying off and we are working on using healthier supplements right now to get the gunk out of my system. Also, a new eating plan with lots of protein and includes more fats than I thought would be good. Trying sugar, gluten, dairy, soy, and corn free for now as well. Just trying to get my digestive system back into shape. With the fibro, I was afraid to let go of some of the things that I've used (ibuprofen) but she wants to find out "who I am" without other stuff going on. Lots of magnesium through the day for that pain and to sleep.

 

I can tell I am going through another kind of withdrawal, but even so, feel better than when on Cymbalta. It does take time to get it out of our system and for our brain to readjust.

 

Keep on taking a day at a time!

[thismoment]

Rasrob good work! And congratulations on working with the nutritionist. Certainly nutrition is a huge part of the foundation of our health. I've often wondered why nutritionists are seemingly given little status by physicians. Hopefully that is changing. 

 

I think the nutrition aspect should be part of the physician's initial assessment. But no, the SNRI prescription comes first.

 

If your car engine is running rough, though, the fuel and fuel system are among the first aspects to be considered. Best wishes!

[rasrob]

I find it interesting that while Cymbalta masks pain, the pain is still there waiting to be dealt with. But, at least now, I know more clearly what I am dealing with and learning to live life again without the lethargy and flatness that I'd grown used to feeling. It is not easy. But, slowly gets better.

 

The nutritional aspect of health has made a huge difference and for now if that is taking more energy and focus, I know it will become more of a habit in time.

Adding exercise...not a long session, short-even only 5-10 minutes if I can handle it. But, I know that will also increase in time.

 

I wish courage for all those trying to kick this stuff. And hope!

 

Happy Holidays to all and thanks for being there.

[Clara]

Yay, rasrob! God bless you and yours with a Merry Christmas and blessed new year!

[rasrob]

Checking back in. I have been free for 6 and 1/2 months. 

 

In October, I had severe flare ups from the fibro due to overwhelming factors and have been on medical leave. I am applying for disability insurance-denied once, but appealing. It may be that I return on a half time basis in a few months. But, it is worth living on an extremely tight budget for a bit. Have more time to sort out what it means to live with chronic illness.

 

Nutrition and supplements have made a huge difference. My mood is stabilizing. Magnesium Glycinate has been a great find for muscle pain and anxiety.

 

However, something happened to my foot. After researching, it may be neuropathy. The first thing the doc said was maybe drugs like....you guessed it, Cymbalta...might help. I almost hobbled right out of his office. What is it with these docs?

 

Anyone have experience with neuropathy? I am trying acupuncture tomorrow and hope it relieves the pressure and pain.

[FiveNotions]

Hi Rasrob, huge congratulations on your 6 1/2 months !

Yes, neuropathy can be a S/E of cymbalta .... Either taking it or getting off it .... I've been having horrid pain in my optic nerves ... Yesterday did some research and figured out that it's cymbalta- related optic neuritis .... I made a post yesterday ..."brain zaps and optic neuritis". ...... As I was doing that research, I started first researching neuropathy ... But found that neuritis describes what I'm experiencing more accurately ... So, you might want to read my post .... Later today I'll retrace some of my research steps and let you know where I found the info about neuropathy .... Apparently it can appear in a variety of locations ....

Also, maybe try a bit of "googling" about this yourself .... Since you know your own symptoms, you may be able to narrow down all the info. That's out there better than I can ...

[rasrob]

Thanks FiveNotions for the direction to search in. It helps strengthen my resolve for next appointment not to start it all up again.

I hope that you are coming along ok in your withdrawal as well. Just keep taking a day at a time.

I continue to be amazed at how long it is taking for my body to balance itself back. I know that I am much better, still sensitive system, but much better.

 

You can do this!

[rasrob]

Well, doc suggested Neurotin this time. I read about it and the side effects sound like others, but not as bad as SSRIs.

He has me increasing slowly, says it can cause drowsiness and maybe dizziness. I wonder why he left out the weight gain part....I dropped 20 pounds in the first 4 months off of Cymbalta pretty easily. Hate to start messing that up again.

 

But, he thinks it will help with the pain in my foot.

 

Anyone had any experience with this drug?

[FiveNotions]

Hi Rasrob,

Here a several articles discussing neuropathic pain using supplements and alternative therapies....

According to this study, acupuncture gets pretty good results....might want to try it before the drugs:

http://www.ncbi.nlm....pubmed/11956896

And:

http://www.hopkinsme...ture_85,P00171/

http://www.researchg...07401a25188.pdf

http://www.psycholog...-pain-naturally

http://www.medicalne...cles/147963.php

I don't have any experience with neurontin....others here may be more help in that regard... But I'll poke around and see what other information I can find....

[fishinghat]

Yes rasrob. I am very suprised he recommended Neurotin. Neurontin has been linked to pancreatic cancer and the FDA has two cancer studies under way. They have already posted preliminary results on the first test indicating a much higher risk of cancer over the normal population. Drs in this area have already removed most of there patients from this drug. Just google "Neurontin cancer" and you will get many hits. You can also look on the FDA website.

[rasrob]

Yikes!

 

Thanks for the heads up. I took 1 today, but will wait until I research further.  

[Carleeta]

Rasob...I was on Neurorin after a bad car accident I was in...It works on the nerve endings I believe..I was on it for five months..Couldn't tell you if it worked or not due to the amount of pain I was in..Please listen to fishinghat. .I'm sure he's done the research on this med and I'm certain he gave you the correct answer concerning this rx..

Good job getting off cymbalta...

[rasrob]

Fishinghat-is it Canada that has made the changes regarding Neurotin?

[fishinghat]

Rasrob, as of this time I am not aware of any country that has changed their laws regarding Neurontin. I do know that the FDA  is just completing its research on the link between Neurontin and pancreatic cancer. The preliminary results indicate "a significant risk". If this is true then they may order it pulled from the shelf, have special warnings attached to it or some other action. If I get a chance later today I will see what is going on with that. It has been a while since I looked to see if the final results are out.

[fishinghat]

I have attached link for the FDA study results. They not only looked at pancreatic cancer but many other types as well. If you look down the page you will see a section of results. If you click on "Show Outcome measure 1" it will give you the results for test 1, if you click on "Show Outcome measure 2" it will give you the results for study number 2, etc. In most cases it looks like the cancer rate for gabapentin users was around 2 to 5 times greater than the control group. All it says past that is that it is a safety factor. No action has been taken by the FDA yet that I can find.

 

http://clinicaltrial...8124?sect=X6015

[fishinghat]

This is the warning the fda now requires on the Neurontin drug fact sheet.

 

"Carcinogenesis, Mutagenesis, Impairment of Fertility

Gabapentin was given in the diet to mice at 200, 600, and 2000 mg/kg/day and to rats at 250, 1000, and 2000 mg/kg/day for 2 years. A statistically significant increase in the incidence of pancreatic acinar cell adenomas and carcinomas was found in male rats receiving the high dose; the no-effect dose for the occurrence of carcinomas was 1000 mg/kg/day. Peak plasma concentrations of Gabapentin in rats receiving the high dose of 2000 mg/kg were 10 times higher than plasma concentrations in humans receiving 3600 mg per day, and in rats receiving 1000 mg/kg/day, peak plasma concentrations were 6.5 times higher than in humans receiving 3600 mg/day. The pancreatic acinar cell carcinomas did not affect survival, did not metastasize, and were not locally invasive. The relevance of this finding to carcinogenic risk in humans is unclear.

Studies designed to investigate the mechanism of Gabapentin-induced pancreatic carcinogenesis in rats indicate that Gabapentin stimulates DNA synthesis in rat pancreatic acinar cells in vitro and, thus, may be acting as a tumor promoter by enhancing mitogenic activity. It is not known whether Gabapentin has the ability to increase cell proliferation in other cell types or in other species, including humans.

Gabapentin did not demonstrate mutagenic or genotoxic potential in three in vitro and four in vivo assays. It was negative in the Ames test and the in vitro HGPRT forward mutation assay in Chinese hamster lung cells; it did not produce significant increases in chromosomal aberrations in the in vitro Chinese hamster lung cell assay; it was negative in the in vivo chromosomal aberration assay and in the in vivo micronucleus test in Chinese hamster bone marrow; it was negative in the in vivo mouse micronucleus assay; and it did not induce unscheduled DNA synthesis in hepatocytes from rats given Gabapentin.

No adverse effects on fertility or reproduction were observed in rats at doses up to 2000 mg/kg (approximately 5 times the maximum recommended human dose on a mg/m2 basis)."

[rasrob]

Thanks, fishinghat, for pulling out that info.

[rasrob]

So, now we are in June. I am still on medical leave. No disability though yet. I am doutful as to that outcome.

It has been the year from hell in many ways, but I have steadily grown healthier, both physically and emotionally. It seems that my foot injury is
"Tarsal Tunnel" which is like carpal tunnel, only my foot is numb and tingly still. It has improved slowly with acupuncture, PT, and minimal low dose of Neurotin-once a day.

 

I have to say for those trying to kick Cymbalta-check out accupuncture. Many of my symptoms are responding, but the best part are the top of the head needles for depression and anxiety. This has made the last couple of months so much better. And would have made those withdrawal symptoms easier to handle. Best part, our insurance covers so it is only a co-pay.

 

It is hard to believe that it was almost a year ago I started to wean off. I would say it has been the better part of the year, with lots of other strategies, that my brain is starting to feel balanced out. Nutrition and supplements continue to make a huge difference. If someone had told me that I would be eating the way I am, I would have surely thought them crazy. Desperation is the greatest motivator. Now, I just know how I feel if I don't eat well and what I am supposed to be eating.

 

So, onward fellow pilgrims. Hope and healing go hand in hand on this journey.