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My Tapering Experience (Slow And Steady)


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#1 minnie03

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Posted 19 June 2014 - 12:23 AM

Hi All,

 

I thought I'd introduce myself and describe my experience with tapering off Cymbalta. So far, it's been a relatively positive experience because of the extremely slow pace of my taper (now approximately 1 mg reduction per month, prepared by a compounding pharmacy). I welcome any advice you can give as I move forward in this journey.

 

Background: I am 27 years old. I've been on Cymbalta for 12 years, since I was 15, for social anxiety. I am currently a reporter for one of the largest newspapers in the United States. I originally was prescribed Cymbalta 60 mg after experiencing panic attacks and social anxiety when I was recovering from a year of stomach pains (eventually had my gallbladder removed and was diagnosed with IBS, etc.) I got better, I went to college and really thrived in that setting. I became an on-campus leader and frequently found myself in social situations that could have been debilitating, i.e. speaking in front of class, being on live TV, etc. Most people didn't know I had issues with anxiety. I only told the closest of friends. I prided myself on being in control of my anxiety. During my sophomore year, my psychiatrist lowered the dosage to 30 mg after I complained of sleepiness and a feeling of being over-medicated. I do not remember any withdrawal symptoms dropping from 60 to 30 mg.

 

Recent history: Over the past five years, I've weighed the idea of getting off Cymbalta. There was no "sparking" point to lead me to this decision. Rather, as I explained to my doctor, I view myself as a different person than the 15-year-old me who went on Cymbalta. I'm confident. I'm comfortable in my skin. I want to know that I can live my life without being on medication. My mom has pressured me for years to get off of it. Also, I'm moderately concerned about the long-term risks of being on Cymbalta. I'm concerned about one day wanting to get pregnant and worrying about the damage to my child. I'm not anywhere close to getting married or having kids, but I realized that this is the optimal time in my life to attempt to stop taking Cymbalta. There is no "rush." I can go at my pace. If it doesn't work, I can get back on it and try it again.

 

First attempt: One psychiatrist (in my previous city) recommended tapering me from 30 to 20 mg to start. However, his strategy was to alternate dosages from one day to the next. I experienced anxiety (heightened by extreme life anxiety related to a work situation) and quickly stopped my tapering effort and went back to 30 mg. I've now read that alternating dosages is a terrible idea because of the half life of Cymbalta. I'm disappointed that this doctor thought this was a viable strategy for success.

 

Second attempt: I moved to a new city in early 2013, and I wanted to attempt the tapering process again. I found a new psychiatrist and was really pleased with demeanor. He didn't try to talk me out of my decision to get off Cymbalta, but he wanted to make sure that I was prepared for what was ahead (symptoms, the rush of anxiety I haven't felt, etc.) He also did question the logic of getting off a medication that has allowed me to be tremendously successful in my career. I told him that it was important to me to at least try. If I tried and failed, so be it. But I had never truly tried to get off the drug I had been relying on since I was a young teen. I told him it didn't make sense for me to be reliant on a drug that was given to me at a completely different stage in my life. He supported my decision but also recommended that I set up counseling sessions with the psychologist in the practice. (more out of pocket expenses- yay!) I agreed, and we mapped out a strategy. We'd start by decreasing the dosage from 30 mg to 27 mg. I would go to the local compounding pharmacy to get the special dosage. Thankfully this was an easy process, and I had no issues with insurance (after the pharmacist called to talk to them). We continued to taper the medication over the rest of the year.

 

The tapering process: Here's the progress I made during the year 2013:

April 2013-  Dosage lowered from 30 mg to 27 mg

May 2013-  27 mg

June 2013- 27 mg

July 2013- Lowered dosage to 25 mg

Aug 2013- 25 mg 

Sept 2013- 25 mg

Oct 2013- 20 mg

Nov 2013- 20 mg

Dec 2013- lowered to 15 mg

 

Symptoms: I had no symptoms until the fall of 2013. I started experiencing a mysterious eye twitch around 20 mg. MRI showed nothing. The eye twitch lasted for a good 3 months until I made the drop from 20 mg to 15 mg. The eye twitch went away, but I experienced a rush of anxious, intrusive thoughts. I remember feeling a doomsday like scenario-- just completely overwhelmed by emotions. After the first six or 7 days, my symptoms eased.

 

2014 treatment: After speaking with my psychiatrist about the symptoms from the drop to 15 mg, he recommended that we taper even more slowly. I was a bit frustrated--- after all, this is not a pleasant process, and stretching it out even longer didn't seem ideal. But the alternative was going back up to 20 mg and holding steady until I was ready to try dropping again. So I agreed to taper down to 13 mg.

 

Jan 2014- 15 mg

Feb 2014- 15 mg

March 2014- 13 mg

April 2014- 13 mg

 

More symptoms: After the drop to 13 mg, I experienced an influx of OCD symptoms. I've always had a few mild OCD habits (have to check my hair straightener a few times to make sure it's off; sometimes I'll check the stove several times, etc.) Suddenly these habits were worse. I was doubling my "checking routine" in the morning. Several times I was out the door, already walking down the street, when I freaked out and thought I hadn't locked the door, so I turned back and checked it. What's weird about these symptoms is that they were far worse than I ever experienced during my social anxiety phase. I made an appointment to see the psychologist, and we talked through the need to "nip this in the bud" immediately. I'm keeping a journal to log my OCD and also refusing to give into the anxiety to check items. I've already noticed an improvement. My psychiatrist recommended slowing the taper even more (arrghhh). We agreed from this point on to taper by 1 mg a month.

 

May 2014- 12 mg

June 2014- 11 mg

 

New symptoms: I feel like each month is an adventure in the world of new symptoms. First there was the eye twitch. Then the world-is-ending feeling at 15 mg. Then OCD influx at 13 mg. Now at 11 mg I'm experiencing uncomfortable intrusive thoughts (for instance- I might be walking down the street, see someone overweight and think "FAT" in my head. The FAT thought feels unwelcome and certainly not a reaction I would ever willingly think in my own mind)

 

Current status: I'm currently down to 11 mg. Of course it's frustrating when I view that as 11 months to go. But I'm also encouraged when I view it as a drop from 60 mg to 11 mg. That's a huge success! Definitely worth celebrating how far I have come. I have many lingering questions--- is 11 mg therapeutic?? Will my symptoms continue to get worse as I drop month by month, or have I already basically experienced the worst? Both the psychiatrist and psychologist are not sure-- said we'll just have to find out as we go along. 

 

Master symptom list:

Nightmares with vivid dreams-- waking up and thinking things are real. 

OCD habits (didn't flare up until the drop to 13 mg)

Eye twitch (now gone)

Intrusive thoughts

Heart racing

Insomnia

Difficulty focusing

Slurring speech (worst during the drop from 30-20 mg. A little better now)

Feeling that my brain is fighting itself (kinda hard to describe, but a feeling that this whole process is not easy for my brain to deal with)

 

 

What I have NOT experienced:

No "brain zaps" - doctor was familiar with the symptom. Said the fact that I'm doing the taper so slowly is probably helping me avoid that.

No panic attacks (fingers crossed that it stays that way)

 

What has helped me:

Yoga

Strenuous exercise (aerobics class, TRX training, high-intensity-interval-training)

Acupuncture

Compounding pharmacy-- no stress of counting beads or making a sudden drop from 20 to 0 mg. The compounding pharmacy has allowed me to take the taper at my own pace.

 

 

Questions I still have:

---  Will some of my symptoms-- insomnia, slurring speech, nightmares, etc. disappear completely after I get off Cymbalta, or is this a lifelong consequence of the medication?

--- Is it worth it? This is a whole lot of nonsense to endure to get off a medication that was perfectly good to me. I had no issues with being on Cymbalta. In many ways, it got me through a very tough part of my life.

--- I've done a very, very slow taper. If I continue 1 mg a month taper, I will be off the drug by spring 2015- roughly 2 years after I started the taper. Am I just drawing out the agony of this process, or is the slow taper more conducive to long-term success?

 

 

Thanks so much for hosting this great community. I'd welcome any thoughts about my process and any advice for the future.

 

"minnie03"

 

 


#2 thismoment

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Posted 19 June 2014 - 01:56 AM

Hi minnie03

Welcome!

What an interesting journey! Also it's the longest withdrawal regimen I've ever heard of, and you've suffered little-- how cool is that? Your symptoms have been relatively benign, and the list is not as long or varied as others I have seen.

In the early days the drug did free you to explore new behaviours and develop appropriate defaults; you are in truth, totally new. I understand the current dissonance regarding the benefits realized from the meds vs the desire to live drug-free. (I know you know there's no award for suffering to be drug-free, but there is some satisfaction in doing it!)

There is anecdotal evidence that a slower taper yields less overt/acute symptoms and therefore less stress. And we know stress affects healing in general. And stress is the engine of anxiety and depression soon follows. So slower is better, but it's unknown if the extremely protracted withdrawal could promote diminishing returns- this is a new one!

Is 11 mg therapeutic? I think so. Will symptoms get worse as the dose is lowered? There seems to be a spike of tenacious symptoms at the last few milligrams, and folks have had to level off for a while at this point-- but because your withdrawal is so gently tapered, we are in unknown territory: neither the shrink, nor the sales rep, nor Eli Lilly has an answer for that! Hell they don't even know how this stuff works, and they certainly don't know the long-term effects of the drug-- that's us, the huddled and cowering subjects of this diabolical experiment!

I love your pharmacy!!

Most symptoms will disappear with time (usually within months, but after years in rare cases) although I'm sure you've read that some symptoms may remain as chronic for life. Is it worth it? To me it was-- I had emotionally flatlined -Zombalta- and lost all compassion, caring, and finally hope just vanished and I was metaphorically sitting in the basement with the shotgun in my mouth. I started bead-counting the next day.

I sense you are missing your little friend-- the friend that treated you well. Why get off? It's a question you may ponder a lot.

Are you drawing out the agony? That too is unknown; maybe you could speed it up and if symptoms overtake you, slow down or back up some.

I enjoyed your well-presented and extremely interesting post.

Best wishes.


#3 fishinghat

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Posted 19 June 2014 - 09:03 AM

Like TM said, you should be fine. Effects of the withdrawal usually fade after 2 to 6 months. Yes there are those where it takes 1 or even 2 years, but rare. I admire your determination.


#4 air3333

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Posted 19 June 2014 - 10:25 AM

Like TM said, you should be fine. Effects of the withdrawal usually fade after 2 to 6 months. Yes there are those where it takes 1 or even 2 years, but rare. I admire your determination.

I went to a new doctor and told me there are no lingering effects months after stopping these medications after the initial withdrawal period. They sometimes believe it is a new symptom of a new illness. I am going to take control of this situation like minnie03. Only the patient has the destiny to change their life. Otherwise people will go from drug to drug for the rest of their life. 

 

Based on these thoughts, I think minnie03 does have the support system to deal with this. However new withdrawal symptoms can occur months after stopping medications (mood swings). I am amazed at the skill minnie03 has navigated the withdrawal of this drug very slowly while working as a TV Reporter. There is no evidence or advice on how slow one should go except for those that actually went through the process. I had social anxiety when I was a child and teen and I am happy that minnie has overcome it as well. 

 

For myself I won't be tapering or reducing past 30mg for a year or more because I know the withdrawal symptoms will last for months or years. I am in a difficult life stage with my graduation, exams, and job search upcoming. I don't know if I will ever take myself off of it unless I have a year hiatus from a job. 


#5 fishinghat

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Posted 19 June 2014 - 10:29 AM

I have no problem with that. More patients need to take control of their health. Hang in there Air3333.


#6 FiveNotions

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Posted 19 June 2014 - 10:44 AM

Air, I apologize...I meant to start a new topic on our struggles with doctors not believing in the withdrawal, telling us it's a return of the old depression or a whole new issue....but I didn't.....I was so exhausted from trying to get my GP yesterday to accept what I was trying to tell him about withdrawal, the extended withdrawal, the adverse reactions to the generic cymbalta and the awful things the brand did to my memory while on it....I also wanted him to know that the law firm Knox Ricksen has taken on the withdrawal issue because one of their partner's wife had it....I told him I wanted him to know this because at some point he may have a patient who has been on cymbalta and is having these issues....because it's a poverty clinic, that person will be poor, illiterate, and not able to explain....

He listened, then said, so what are you here for? I saw the note he typed into my chart...patient says law firm is representing her against the mfgr....hopeless....

I also told him about the anxiety issue that started up two weeks ago, and that the shrink has left the clinic...he was shocked...no one had told him...

I asked him if my old beta blocker, metoprolol, could be used for anxiety, to get my heart rate down....he said blockers are never used for anxiety....and put me on a mild diuretic....

All that in just 10 min....

Sad thing, He's basically a competent doc...volunteers at the clinic one day a week...I was a walk in, the third of four...there were 32 patients ahead of me.....all with appointments....all poor, Hispanic, mostly illiterate and Spanish speaking, likely illegals....he's doing the best he can with a nightmare situation....

His nurse told me it's only gotten worse...much worse, since obamacare...she said "it's helping no one and hurting thousands... and this is just the beginning ...."

#7 FiveNotions

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Posted 19 June 2014 - 10:50 AM

Minnie, welcome! I did not mean to hijack your thread! I apologize!

I'm really impressed at the plan you've got going, how slow and patient and thorough you are being with the withdrawal, and how determined you are! I'm also delighted you have a supportive doc....as you can tell from my little rant, above, it can be crazy-making when docs are clueless and in denial....

I'm very glad you found us and have begun posting...please stay here and continue posting....your input is both informative and full of hope!

You may still hit a rocky patch...or two or three..if so, just realize.that's part of the process....we're here if you need us!

#8 thismoment

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Posted 19 June 2014 - 11:13 AM

It will be interesting to see how this plays out with Minnie03.

 

I withdrew in 6 weeks which was way too fast-- I experienced extreme side-effects that went on for many months. And therefore, I've been suggesting that 12 weeks might be a minimum for withdrawing, but 100 days is easier to work with. Perhaps it ought to be 52 weeks. Would that be wrong?


#9 air3333

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Posted 19 June 2014 - 11:33 AM

No problems FN. I tend to look at the bigger picture. Physicians are scientists that had years of schooling and studying these problems. So it makes sense they are not going to believe me on anecdotal evidence. There are no studies about medium-term withdrawal effects of antidepressants. It makes sense to me they will take these thoughts with a grain of salt. That doesn't mean that the physicians are correct in their assumptions of the data. They are doing the best they can to alleviate the symptom for which the patient complains about. and I think the patient can start to believe they are depressed after withdrawal because symptoms are really out of control. 

 

Sometimes it is good to get another side to the story including dissent in any problem. Why should one look for dissent about the issue? Because they may be right. It does look like the profession has a confirmation bias that the medicine does not cause problems and it is almost always the underlying illness that the medicine put into remission. Confirmation bias is the tendency to look for those that will agree about the issue and ignores dissent. After all, we are talking about mental patients who have OCD and depression and anxiety and these people may have a defect in their brain.

 

It leads me to think of a few things when I think of the profession's logic 

 

1. Confirmation Bias may or may not be rampant

2. They may be totally correct about the diagnosis and the withdrawal symptoms are in fact not there.

3. They may be totally wrong and they do not believe it because there is no data on it.

4. They do not really know much about measuring the brain for these disorders.

 

This is not a conspiracy, this is the reality. No one, including physicians knows for sure what is going on in the brain. It is the most complex organ in the human body and the physicians are trying to the best they can after studying about theories about the brain. 

 

Patients have to take their own lives into their own hands like Minnie and do the things that will alleviate it more such as exercise, meditation, hobbies and avoid things that may hurt oneself. Sometimes the diagnosis itself is damaging and the assumptions of the physician makes it even worse.


#10 FiveNotions

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Posted 19 June 2014 - 11:36 AM

TM, I don't think there's any "wrong" or "right" approach....just what seems to work best for each individual....and therein lies the challenge....

FH often uses the phrase "play with it a bit," ....meaning we each need to be willing...and able...to make adjustments as we go along....of course, there are those like me who do it all at once, cold turkey....and have no control over anything...then again, we've had folks here who came off with virtually no problems...and I'm sure there are many, many who never post here because they don't have any difficulty at all...

Minnie has developed and is using the longest, most gradual and planned out withdrawal process I've ever read about....EquusWoman removed just one bead a day....you did it in 6 weeks...

The only thing I can be sure of,and I'm open to that changing as well...is that going slower is safer....and developing a plan is more prudent...and being flexible enuf to adjust that plan as needed are key elements for anyone who wants to get off this stuff....

I'm delighted Minnie has posted her plan, and I'm looking forward to hearing how it continues to go for her....we can never learn too much about the poison and the different effects it has on different individuals, and the myriad of ways that are used to get off it....

There's no way any one doc or shrink could take the time to follow all this the way we do....shame they won't listen to what we can teach them....

#11 FiveNotions

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Posted 19 June 2014 - 11:38 AM

Air, your additions to this forum are invaluable! Thank you! Please stay with us and continue participating, we need you!

#12 thismoment

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Posted 19 June 2014 - 12:28 PM

 "I don't think there's any "wrong" or "right" approach....just what seems to work best for each individual....and therein lies the challenge.."

 

FN I think you are absolutely right, and we might have a conversation about creating a simple protocol for beginning the weaning- a kind of testing the waters-  along the lines of fishinghat's "play with it a bit" recommendation.

 

I agree that setting a firm timeline makes no sense in general, but having said that, perhaps a fixed long one is better than a fixed short one. But yes, it needs to relate to the individual and adjusted as-you-go. It's an organic, living process that is modified in real-time.


#13 fishinghat

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Posted 19 June 2014 - 01:25 PM

Absolutely. Well said my friends.


#14 minnie03

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Posted 19 June 2014 - 02:36 PM

Hi all,

 

Thanks so much for your responses. I'm really grateful for the support.

 

I'm also excited to serve as a "case study" for longer-term tapering. I will definitely keep all of you posted on my progress. I drop down to 10 mg in July. Walking into the compounding pharmacy each month feels like a small victory, knowing that I'm taking the next step to getting down to 0.

 

I can't help but wonder if there are thousands of young millennials like myself who were prescribed this medication as teenagers but are rejecting the notion that we need to spend our adult lives on this medication. We seem to be part of a generation that was prescribed antidepressants and ADHD drugs abundantly during our formative years. I question the long-term impacts of taking these drugs before our brains were fully developed. It would make a fascinating book, for sure. 


#15 FiveNotions

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Posted 19 June 2014 - 04:01 PM

Well Minnie, as a reporter for a nationally known media source, and as someone who is herself getting off this stuff, you are uniquely well-positioned to further our cause!

#16 thismoment

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Posted 19 June 2014 - 04:07 PM

minnie03

 

I agree, it would make a fascinating story. I'm sure you're familiar with this website:

 

http://www.ssristories.org


#17 ittybittysmitty

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Posted 20 June 2014 - 12:50 PM

I just need to vent...

 

I can't drive today because I"m too dizzy...it feels like I'm playing a video game and am driving in it..i'm having a weird visual disturbance like my eyes are shaking or i'm in a weird dream state. I got in the car planning to drive 30 minutes to visit a friend and quickly realized that wasn't going to happen...so I stopped at a nearby coffee shop and the was irritated because i'm alone and they all had someone with them...

 

Neverthless, I am happy to maintain a social network here and on facebook BUT it's not the same. ..I'm angry because i have to keep cancelling...so i've decided my friends will have to drive over here...if they don't they suck....

 

Maybe God is up to something because I've always been super independent. Maybe i need to learn to be more dependent on others.

 

I'm on day 34 still on 30 mg and 40 mg of Celexa...I see my psychiatrist next Wednesday...

 

Hoping everyone is enjoying your day.


#18 fishinghat

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Posted 20 June 2014 - 12:59 PM

You know IBS I am probably repeating this but just wanted to ley you know that people over 60 are not suppose to take Celexa due to the risk of 'severe cardiac arythmias' . And the fda has recommended that the dose never exceeds 40 mg for anyone. Just thought I would pass that along.


#19 Clara

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Posted 20 June 2014 - 01:16 PM

Ohhhh, f'hat, I did not know that!! I have a dear friend on Celexa, has been for years. She's well over 60 and has had heart arythmia for some time now. That is scary! But she def' needs the Celexa to be able to deal with so many of life's difficulties. She IS treated for her heart problems so I should probably keep this to myself, huh? It really gets frustrating when you even post on FB about the dangers of antidepressants! ARG!!!! SO, I'll just keep it to myself and speak when spoken to!  That is tough when I wanna help, but.....


#20 minnie03

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Posted 25 September 2014 - 03:47 PM

Hi guys,

 

Just wanted to give you a brief update.

 

I am now down to 8 mg. In two weeks, I will be dropping down to 7 mg.

 

A few positives:

I have yet to experience brain zaps.

I have not had debilitating withdrawal symptoms.

I have not felt overwhelmed, nor have I considered stopping the tapering process, even in the middle of a brutal work project that was published in early September.

In reading my old post, I saw that I had mentioned a flood of intrusive thoughts and OCD feelings. I have controlled those feelings and actually eliminated some OCD habits that cropped up.

 

A few negatives:

My eye twitch is back.

I feel so fatigued.

My speech issues have returned-- I sometimes feel nervous before answering a question. Sometimes I slur my speech and have trouble "spitting out" my words.

 

 

I go back to the p-doc in a few weeks. I talked to my compounding pharmacist (we are now practically B.F.F.), and he recommended going faster-- dropping 1 mg every 2 weeks so I could be off of it by the holidays. At this point I'm considering maybe trying that in November after I return from a 2-week vacation. If I followed that plan, I'd be down to 3 mg by Christmas. 

 

I have a question, do any of you recommend OTC supplements for "getting over the hump"? Specifically, are there any supplements that could help with the brain fogginess and fatigue?

 

Thank you so much

"minnie"


#21 thismoment

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Posted 25 September 2014 - 04:12 PM

Hi minnie

 

You are doing so well! Good for you!

 

You are working your way through this and your system is working, so stick to it.

 

Regarding the eye twitch-- how much caffeine do you consume? It can be related.

 

Some elements of function can certainly be affected by these drugs, and most symptoms go away. Some things may require re-training, and that may include your speech-- which may have suffered a little degradation during your time on the drug. There are speech therapies available that will tighten up your speech via exercises and practice. Don't worry.

 

Your pharmacist is speaking as a 'friend' when he encourages you to be "off by the holidays", because that's what he would want. This can't be about him. Increasing the rate is an adventure you may not want to undertake. As soon as you put the timeline in charge it becomes about the Time, the event (Christmas), or some other Deadline. My advice is put the symptoms in charge, and let them dictate the rate of withdrawal-- so far so good.

 

I don't know about supplements, but FN and others do. It sounds like you could use a jolt of dopamine. While it sounds counter-intuitive, often getting more exercise will increase your energy level.

 

Take care.


#22 minnie03

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Posted 25 September 2014 - 08:56 PM

Hi thismoment,

 

Interesting that you mention the exercise. I've had a sprained ligament in my ankle and have not been exercising for the past three weeks (I've been in a brace). I never connected the lack of exercise to the increased fogginess, but now that I think about it, it makes sense. Good news is, I just went to the podiatrist and was cleared to exercise again starting next week.

 

Thank you for your advice about following the symptoms and not setting artificial deadlines. I think you bring up a good point.





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