Hubby who has CIDP–MADSAM has fatigue ++ and he takes Alertec prn. It helps.
Laurel

Being a single mom working fulltime with an 8 month old would exhaust even healthy individuals…I can’t imagine how exhausted you really feel with the CIDP on top of it all! My heart goes out to you and I wish I lived closer so I could help out.

Try to get rest when you can and don’t sweat the small stuff!

Take care,
Rhonda

I have extreme fatigue, & the only thing that helps me is sleep. I had to go on disability for my CIDP almost 9 years ago, as I was in very bad shape & was refractory to all treatments. My youngest was 21 at the time & away at college, so I was lucky in that respect. I usually have to go to bed by 11:00 & sleep until 10:00 to feel somewhat normal, not that I really do. Wish I could help you, maybe one of the drugs like Alertec or Ritulan might help?

I’ve not yet been diagnosed with CIDP, but I DO have Chronic Fatigue Syndrome, Fibromyalgia, and much more, so fatigue is a constant problem. Not just being “tired”, but “bone tired”. Today is a good example; I’ll have a period of “good days”, and I’ll really try not to overdo it, but when I “flare”, I get extremely tired.

The things that work for me:

[B]B-12[/B], at least 250 mcg, which is something like 8000% of the daily recommended amount. There is no harm in taking this much, as Vitamin B is water-soluble, and your body just “eliminates” the excess in your urine. You can also get 500 mcg tablets.

[B]d-Ribose[/B]: When you are fatigued by these conditions, your body is robbed of Adenosine-5′-triphosphate, or ATP, which is a [I]”multifunctional nucleotide used in cells as a coenzyme. It is often called the “molecular unit of currency” of intracellular energy transfer.[1] ATP transports chemical energy within cells for metabolism. It is produced by photophosphorylation and cellular respiration and used by enzymes and structural proteins in many cellular processes, including biosynthetic reactions, motility, and cell division.[2] One molecule of ATP contains three phosphate groups, and it is produced by ATP synthase from inorganic phosphate and adenosine diphosphate (ADP) or adenosine monophosphate (AMP).” [/I] d-Ribose is basically a sugar, or carbohydrate, that helps your body make ATP. Be careful which brand you buy, because some of it tastest horrible! Certain brands have a very strong, almost Molasses taste to them. [B]While this is NOT an endorsement[/B], I use “Source Naturals” brand, in the chewable form.

[B]Provigil/Nuvigil[/B] These two drugs are prescription-only, and are Class III controlled substances. Don’t let that scare you away, though. They were designed to help people with sleep apnea, shift work sleep disorders, and other things, but are commonly being used to treat fatigue patients. One nice attribute is that they also help a little with pain, and they also affect your metabolism in a way that sometimes makes pain medications more effective, according to my doctor. Talk to you doctor about these if you’re interested.

Finally, I’ve learned that one of the most important things is to learn my limits and stick to them. That’s hard…amazingly hard…especially with small children in the house, but it’s crucial. If you don’t, you force yourself into a vicious cycle of feeling fatigued, then feeling better and “over-doing it”, then feeling fatigued again, etc., etc., etc., ad nauseum. An actual WRITTEN schedule for my days was required, both to keep me within my limits, and to keep me from letting the days slip away while I played Angry Birds all day. 😮

Hope it helps.

Elmo

A single Mon, a 8 month old and a middle school teacher, you are truly amazing!! I just tried to teach middle school for 9 years and it cleaned my clock. I think you have already gotten some sound advise. I would only like to suggest that you might think about networking with your fellow teachers, friends etc to build a support system to lighten the load. Don’t be afraid to ask for help. Lord knows we all need it at some time in our life. So it’s your time now. It a little bite you will be able to help someone else. That’s what makes life so interesting

Micah’s mom,

I struggle with the same issues. I work full time and have a 3 and 5 year old. There really isn’t much you can do except plow ahead. I take a lot of supplements: B12, Vitamin D, fish oil, CoQ10, multivitamin, probiotic. I added in the probiotic a couple of months ago and upped the vitamin d recently to 2800 iu and have found that it helps. I started this supplement regimen 6 months ago. A friend who goes to a CFS clinic passed along this info. It has really helped a lot. I don’t feel 100% and struggle with a lot of pain, but as for giving you the energy, it does help. You might want to add in Co Q10 if you are going to add anything. 400 mg, I think. If you need specifics, I can PM you. I feel for you because I am in the same situation and it sucks!

Jessica

You may not want to hear this, but I have had to resort to taking naps.

Of course, that severely impacted my ability to work 40 hours a week at some point.

Do what you can, but stop when you are tired. If you do too much it will take extra long to recover.

I struggled with fatigue during the first two years after my diagnosis. I could get through the work week, but I was useless on the weekends.

I also noticed I had a lot of digestive problems during that time. A friend told me about celiac disease and gluten sensitivity. I cut gluten out of my diet and found that I had a lot more energy — if you are sensitive to gluten, your body will not absorb the nutrients in food efficiently and you will feel tired a lot.

I still need naps from time to time, and I don’t expect a lot of myself on Saturdays, but overall, my energy level is much, much higher since I’ve been off of gluten.

Just a thought…

well, I stopped the vitamins and suplements I was taking. I think the vitamins helps the immune system to get stronger and more nerve damage and fatigue came along. If not, why inmunodepressed people are given lots of vitamins to get a strong immunse system and get lees infections, flues, colds,….

My suggestion would be to make sure the B12 you are taking is sublingual or liquid under the tongue and have you had your thyroid checked? Many of us CIDPrs have that issue too.
Wendy 🙂

After I read another answer, I too, am trying gluten free. Haven’t done it long enough or have forgotten and eaten something I shouldn’t to tell yet, but I’ll keep plugging away. Worth a try for sure..
Wendy 🙂

Fatigue comes from several sources:

1. Fatigue from the disease itself. This is poorly understood, and not examined much because fatigue as a symptom is “not significant” — it could be indicative of so many different things that it doesn’t tell the doctor anything useful. CIDP people definitely have it though.

2. Fatigue from increased difficulty with everyday activities. If it takes more energy, and more concentration, for you to carry out normal, everyday tasks, you will find that you are getting tired faster.

3. Fatigue from stress and uncertainty, or from full-on depression.

4. Fatigue from de-conditioning. If your movements are more restricted, and it is difficult to get a normal amount of exercise, you will start losing more of the physical capacity that you had before illness, and getting tired more easily.

5. Fatigue that is a side effect of treatment.

There are other potential sources too, I suppose.

#1 you really can’t do anything about. When you and your doctors find a successful mix of treatments and you get a sustained remission, the fatigue will recede. It may be the last symptom to go.

#2 you can help to some extent by changing the way you do things. Don’t expect that you can work 12-hour days, take every opportunity you can find to make things easier for yourself. This is a hard adjustment for many people.

#3 you can work at reducing. Counselling is better than pills, IMO. Left unchecked it becomes a vicious circle: more fatigue leads to more bad stress or deeper depression. Doing the things that make you happy, demanding some pleasure from life, talking about your feelings, all of these things can help. A counsellor who specializes in serious illness can be a big help in managing this.

#4 A physiotherapist should be able to point you in the direction of exercises that are not strenous (you don’t need that) but will contribute to your overall health. This kind of fatigue can also be a vicious circle unless you deal with it: fatigue->inactivity->more de-conditioning->more fatigue .

#5 To some extent we are stuck with this, but effects of medical treatments that affect your quality of life should always be taken up with a doctor or nurse-practitioner. The more specific you can be about the onset of the fatigue and the way it affects you, the better.

Hi Bill,

We used to live in Howell-Brick area when Frank was diagnosed with GBS/CIDP

His Neuros were Dr. Peter Barcas in Brick and Neptune, his other Neuro was Dr. Albert Tahmoush from Philly, but Frank saw him at St. Francis Hospital in Trenton. Both are very knowledgable in GBS/CIDP. But we liked Dr Barcas the best. He treated Frank very well, listened to him intently and cared alot about his patients. Dr. Tahmoush is a great Neuro-muscular doc who specializes in GBS/CIDP but his personality was stinky and Frank didn’t feel comfortable with him at all. Even after we moved to Barnegat we still traveled to Brick to Dr Barcas.

Some Docs just don’t have the compassions as other docs do.

Fatique is such a major factor with alot of GBSERS and CIDPERS, even years later the fatique factor, pain, and drop foot are still with the patient. Are you taking anything for the pain?

Wishing you the best.

Could be fatigue, however Neurontin will do it also. I used to find myself dozing off often in situations where I normally wouldn’t. If you are on high doses of Neurontin, ask your Neuro about Lyrica, for me I take less pills, works better and doesn’t make me sleepy. Hope that helps.

Jerimy

Fatigue is a huge problem for me, too. I work full-time and have a hard time getting through a full day. Before IVIG, I was so weak that fatigue was constant. Now, I’m much stronger but still tire easily. It’s especially bad if I don’t get a good night sleep (which is most of the time!). I don’t know if it’s the CIDP or an effect of the IVIG — or both. I just try not to stretch myself too much and rest when possible.

Also, if you started feeling the fatigue about the time you started the Cymbalta, you may want to talk to your doc about a different med. Fatigue is a side-effect of about every drug on the market, but people react differently to different drugs, even if they are the same general type. I used to take SSRIs (Celexa) which worked great on my depression but had other long-term side effects, so I take Wellbutrin now and maintain a pretty steady mood. Years ago, when depression first hit me (postpartum), therapy helped a lot, too. Something to consider if meds alone aren’t doing it for you. I’m considering it again just because it’s really hard to accept living with CIDP.

Wishing you the best,
Caryn

Fatigue seems to be a residual that most of us just have to live with, just like so many of the automimmune illnesses. I fought it for so long, until I would virtually hit what I termed “the brick wall.” It’s taken me 5 years, but now I have learned one thing, that unless I am well rested I will feel horrible. I now admit to needing 10-11 hours of sleep every night, & I am not embarrassed to admit it.

I blamed my tiredness during the day on stress, fatigue, more to do at work, new kids etc.

Finally I had a sleep study done and was diagnosed with sleep apnea. I use a CPAP machine (no oxygen) and have been “cured”.

I don’t know if it is in your cards, but if nothing else makes sense, get your Doc to schedule a sleep study. Mine was covered by insurance.

Dick S

fatigue is horrible for me… i have found myself falling asleep at work, i’ve been taking mini-naps at red lights for a few years now. last month i fell asleep driving and drove up onto a curb, that was an eye opener for me.
the way i understand some of the fatigue with cidp is that not all of the nerves are capable to deliver the messages to the muscle fibers, particularly the legs. therefore, u may have “x” percentage less of the muscle working for you.
i love to sleep, however, getting to sleep can be hell some nights, but i’m a marathon sleeper…. 14hrs. last nite. i’ve had the cpap machine for a couple years now, i was not getting sufficient oxygen while asleep, but the is a totally different feeling than having undiagnosed obstructive sleep apnea.

does anyone take ritalin or adderall during the day to help the fatigue???

*My apologies if this has already been discussed*

Hi Flower,

i’ve been taking mini-naps at red lights for a few years now

This is alarming – please take care of yourself.

Just yesterday, I came across some info that may be useful to you, and others. Mabe you will find it worth discussing with your doctor.

[url]http://ajh.sagepub.com/cgi/content/abstract/23/5/412?rss=1[/url]

Here is an excerpt:

Modafinil is used to treat the symptoms of fatigue and excessive daytime sleepiness in narcolepsy. However, fatigue and subsequent excessive daytime sleepiness secondary to fatigue are common symptoms in many neurologic disorders. Prior reports on patients with myotonic muscular dystrophy, multiple sclerosis, Parkinson’s disease, and amyotrophic lateral sclerosis, have shown beneficial effects of modafinil in treating fatigue. We report 4 patients with genetically confirmed Charcot-Marie-Tooth disease who had significant fatigue that was almost completely relieved by modafinil.

Additional info can be found at wikipedia for Modafinil. In the USA, the most common name for this drug is Provogil, but unfortunately, it is very expensive. I’ve read that insurance companies do not want to pay for expensive Provigil when amphetamines are much less expensive. Some other brand names are Vigicer, Alertec – sold in Canada. This class of drugs (Schedule IV drug – low abuse potential) are different from Adderall, which is a stimulant (schedule II controlled substance – high potential for abuse). (wikpedia)

As expensive as it is, it may be worth it to convince your insurance company to pay for it in order to safegard your well-being.

Best wishes, and BE SAFE.
cd

Bill,

I am constantly tired. I know this sounds lazy, but there are some days I sit on the couch thirsty or hungry and look at the kitchen and go “yeah, maybe when the kids get home”, because I am so tired I really can’t stand the thought of walking there and it’s not that far. I was told it’s normal.

Kel

I had a sleep study and treatment, which did help. However fatigue is still a problem.

Fatigue is something you have to learn to manage, just like you have to learn to manage mobility problems or dexterity problems. I found that once I could cut down the amount of fatigue that comes from anger, fear and sadness I could function much, much better. It didn’t eliminate the fatigue that comes from the disease and from inactivity, but it made a big difference.

Oh yes, so tired all the time. I find I get hit really hard when my IVIG starts to wear off. Could sleep for days.

This thread is SO appropriate for me right now — I’m exhausted and at work.:)

I’ve been going along just fine and boom, my exhaustion sets in – again. It’s so frustrating. And, I know there’s no solution either! So, I’ll go home tonight and go to bed very early – 6 or so. Had to leave choir practice last night about 8:15 because I was exhausted.

Fatigue does affect what I do — I’m always “pacing” myself because I know that if I do too much, I’ll suffer the next day or so.

I’m hoping to be “recovered” by the weekend — I have to make a “Tinker Bell” dress for my granddaughter!:D

Bill,

I had the nose thing as well. The Dr. straightened the crookedness. It helped me breathe, but didn’t stop the sleep apnea. I still deal with it. Sleep for me is an adventure, the CPAP mask, stiffening of muscles overnight, pain when I stretch out in the morning.

Sleep is over-rated right now.

Dick

If I’m battling the (ever-present, horrendous) fatigue and must stay awake (like, to drive), I use Adderall (the generic, actually.) Provigil did nothing for me, and I do not want to try it again– I’m concerned that its long-acting properties will backfire and make restful sleep (already a challenge) even more difficult.

My pain medication specialist agrees, an advantage to the Adderall is that it flushes out of my system quickly– it’s there when I need it, then gone when I don’t.

I probably need a sleep study done, but I have been using those ‘Breath Right’ nose strips and they seem to help alot. Something simple!

Fatigue can be disabling from this disease. I have sleep apnea as well, and use a bi pap machine, but there is still fatigue.

If you wake up more tired than you were when you went to bed, then apnea may be an issue.

I have tried provigil in the past. Provigil is a CNS stimulant my neuro gives to MS and CIDP patients that have fatigue. It caused me to have pretty severe headaches so I only took it when I knew I had to push myself. Now, it seems the headaches are not guaranteed, but they do occur on occasion after taking it. Might be something to look into for those suffering from fatigue. Does anybody else take any kind of stimulant?

Unfortunately fatigue has always been a problem for quite a while. It wasn’t until I was diagnosed with CIDP that I began to understand what was going in. Provigil didn’t do too much. The Cpack [sp?] for sleep apnea sometimes more problems than it solves.

The only suggestion I can give you is try and find your “work/exercise” tolerance level and try and strike a happy medium.

I feel like I just struck gold reading everyones input on this issue of fatigue. More than any other symptom, I have struggled with this one the most because I thought it was just me not taking better care of myself or just being lazy. I constantly look at other people who are around my age and think, they do a lot more than I can. I sleep roughly 12-14 hours a night after struggling to get to sleep whilch sounds ironic but once I am asleep I am gone. Since I had to stop working I can now just rest when I need to and go at a very slow pace. I actually enjoy this benefit of being on disability.
I am learning through this forum that we definately know our bodies better than anyone. I am encouraged to keep listening. Thanks

thank you for this marvelous thread. it couldn’t have been posted at a more appropriate time.

fatigue is a constant with me. currently what exacerbates the situation for me: heat and humidity. the combination of these two things, particularly the humidity, is absolutely toxic and wipes me out. i feel like i’m walking under water and being dragged down……

last friday, after working a full week (which also included two visits to doctors)through a haze of complete fatigue and exhaustion, i crawled into bed at 7 p.m. and didn’t get up until sunday morning. i felt like i had experienced a complete cidp breakdown. mentally and physically i was totally wiped out.

for the past 5 years since being diagnosed with this i’ve always felt like i have a certain amount of “good hours” per day available to me before i fatigue out. i try to be careful about doling these out each day.

i find that drinking lots of water, eating more low fat protein and try to cut down on the carbs at lunch. too many carbs at lunch really seems to push the old fatigue button and can make me sleepy…..

best,

brad

Very good thread.

I have been off work for 2 years now due to fatigue. I have had a sleep study and have have mild apnea, but the machine has not helped my fatigue.

I have what I call crushing fatigue. When it hits, I cannot sit up in a chair. I have some of the regular symptoms including tingling, progressive numbness, pain, extreme sensitivity to touch, the feeling of being on fire, and nausea which seems to be brought on by the fatigue. When the fatigue is severe, I am sick.

The thing about this is that it might be OK in the AM and severe following lunch. It might be bad all day long or it may not be too bad for the whole day. There is no pattern, it just sucks most of the time.

For me, my neuro believes that I am disabled because of the fatigue and has signed paperwork stating that. I just received notification that my private insurance has decided that I meet their definition of completely disable and now will receive benefits until age 65. Good financial news, but on the whole, I would much rather be normal and working.

Hutch

I am resurrecting this thread because I have a question. Like you fatigue has become a daily problem. I want to talk to the new neuro I’ll be seeing in 10 days and ask about a prescription. I did some research and came across Ritalin (methylphenidate). I don’t like the jittery feeling of stimulants (like too much coffee, never had amphetamine-like drugs, though). But Ritalin seems to be on the mild side.
Does any of you have any experience with it or any suggestions?

Norb Provigil works great for me, but it is really expensive and the only reason I can continue to take it, is because my Dr. gets samples from the drug rep and supplies them to me. Once that stops I will probably have to go to Adderall, which is much less expensive but made me a little jumpy. One thing though…….the provigil is long in its duration of action, so if you don’t take it early it’ll keep you up. The Adderall is shorter, but it did make me jumpy. Good luck and let us know how it goes!

Norbert,

Ditto Oneluckygirl. The Provigil has helped me tremendously. I have tried going off it (in fact took only 1/2 dose in Greece) and it was awful. I remember when I spoke to Jerimy once, he said something to the effect of Provigil being ‘similar’ or somethin like that, to Ritilin, or he was prescribed Provigil but then went on Ritilin because of price (Jer, correct me if I’m wrong) I have also read recently that Provigil is given to ADD patients. However, saying that, my first week on it I was very jittery, but that soon wore off.

Hey Guys

You should have told me about Provigil…I had tons of the sample boxes, but
I never took them…so just last month, I threw them away. My neuro gave
them to me because I was working at the time, always fatigued, but I’m
not a pill taker…the less the better. I could have mailed them to someone
to use. Ritalin is used for ADD and ADHD. They say it’s stronger than a
cup of coffee, but less than amphetamines…it works in pumping more of the
dopamine in your system. It is highly regulated…do you really need to use
this Norb?

Miami Girl

Mega-dittos on the fatigue. Inactivity doen’t help matters. Not a whole lot to do when you don’t feel good enough to do much of anything. How profound… NOT.

[QUOTE=billstein]I often find myself falling asleep at my desk in the afternoons. Is this fatigue a side effect of the CIDP?

I’ve experienced pain, numbness and electrical activity in my feet and legs for years. It started in my feet, and slowly progressed- it’s now reached my thighs. I have some foot drop, and recently experienced episodes of ataxia (mostly when my leg or knee doesn’t do what I expect). The biggest problem is the pain- I often wake up in the middle of the night with severe pain in my feet, and cramp-like pains in my thighs and calves.

At first I thought the fatigue was due to interrupted sleep, but some weekends I find myself sleeping all day, and still feeling tired.

I take neurontin, and couldn’t survive without it. I recently started taking cymbalta, which helped my mood at first, but lately- well…. I underwent IVIG with no effect except a very debilitating rash that covered most of my body. I recently started seeing a new neurologist, whom I was told is among the best in the country, but so far he hasn’t made me feel particularly hopeful.

But at the moment, it’s the fatigue that really worries me- it’s the first symptom that has the potential to really affect my work- and I’m not ready to retire.[/QUOTE]
Your first three paragraphs are a carbon copy of some of the symptoms I was experiencing five years or so ago. Only my desk was usually going seventy miles an hour. I as well wasn’t ready to retire but sometimes choices must be made while they still exist. Of course every-ones particular situation and condition differs. It’s interesting to recognize many of us sharing similar if not sometimes identical situations in an uneasy sort of way.

I sure do wish more Drs would recognize this “post GBS fatigue”! The Provigil helps a lot, but the fatigue is still there. I think when you take a medication like this, you have to be careful because it doesn’t “cure” the fatigue it just allows you to push through it when you couldn’t otherwise. I often worry about returning to work, as I am on disability right now. I can’t imagine having to work right now. I work in a hospital, on my feet for 8-12 hours with few breaks. I know that my body can’t do that right now, and it’s scary to sit and wonder if I will ever be able to return to work, I’m only 38! It sounds like this is a common concern. Take care!

[QUOTE=NOYACANT]Mega-dittos on the fatigue. Inactivity doen’t help matters. Not a whole lot to do when you don’t feel good enough to do much of anything. How profound… NOT.[/QUOTE]

Well I do spend quite a lot of time on Second Life, I’ve met a lot of people there who have medical problems, though noone with CIDP or GBS yet. When I am too tired to do anything and can’t see well enough to read I go build something on Second Life, or talk to one of my neighbors about their day, or go visit a place someone has built. It’s not a game, it’s a 3D virtual environment, kind of like an international chat room with really great graphics. It’s free, it’s interesting, it takes very little energy and believe it or not I’m actually making a little $ selling things I’ve made. Note the LITTLE, $10 doesn’t go far in real life but does wonders for my ego!

Last night I sat at a beach bar I made and had virtual happy hour with a couple of friends in New Zealand and we compared “I”m so tired” jokes. Made me feel almost normal!

[url]www.secondlife.com[/url]

No I don’t work for them but it has been a place for me to go and learn new things and not feel like such a slug all the time.

[QUOTE=Miami Girl] It is highly regulated…do you really need to use
this Norb? [/QUOTE]

Thanks for all the feedback. You guys are great.

No, Miami Girl, I don’t h a v e to take anything but I am so tired of being tired all the time. It’s enough to have to deal with the neuropathy that keeps getting worse all the time and the IVIG does nothing to help to stop it or slow it down a lot. I am not depressed thanks to the drug industry. Why shouldn’t I do something about the fatigue if there is something that might help.

I don’t know this new neuro yet and have to wait and see how she feels about it. I hope it all works out transferring my care to this one here where I live instead of driving the 1 1/2 hours to Denver all the time for doctor visits and treatments. I no longer feel safe staying at my daughter’s tiny house since symptoms have gotten worse. The house is half the size of ours, feels cramped and using the rollator to get through the narrow hallways is getting to be a pain, getting into and out of the bathtub to shower is a major undertaking. Sleeping in a partitioned-off 1/2 garage without ventilation or heat in the winter is no fun. Carol sleeps on hard folding-up Thai matresses on the floor. At least we finally squeezed in a bed with a regular matress because it was hell for me to get off the floor.They are doing their best and they want us to keep coming but it just is too much. The house is all they could afford on her measly salary as M.D. resident and he works his butt of trying to pay off their debts.

Sorry guys, I think I started to vent 😮 . I forgot we were talking about fatigue.

[B]Julie[/B], I did take a look at “Second Life” the first time you mentioned it. Looks fascinating but I was afraid I could not handle it with the problems I am having typing and the mouse not working well for me

Norb,

It is worth taking something to make life worth living so that it doesnt pass you by while sitting or sleeping all day. I know I have said this over and over and over and over …. I HATE TAKING PILLS! I never used to even take headache tabs, that is why i tried going off Cymbalta first, and a few months later Provigil …….. AAAAAAAhhhhhhhhh, with horrible results AND back to square one! Hopefully I have started getting my head around the fact that taking the pills isnt baaaad. I can at least go shopping for groceries – yes a full cart now instead of some milk and bread only! – without getting back to my car without collapsing and crying because the fatigue is so … FATIGUE its almost painful!

I still have many off days, but at least I can joke and go places with my kids a lot of the time. It helps me push through most days, and i still do nap. BUT IT HELPS ME LIVE a little.

Norb

I completely understand how you feel…it’s just that, sometimes we take so
much of every thing, it eventually takes a toll on us.

I get tired alot, then take naps…or, if I can’t sleep, I’ll wear myself out by
doing something until I can fall asleep.

You seem so healthy, in shape…can riding the exercise bike more help with
the fatigue?

Miami Girl

[QUOTE=Julie]Well I do spend quite a lot of time on Second Life, I’ve met a lot of people there who have medical problems, though noone with CIDP or GBS yet. When I am too tired to do anything and can’t see well enough to read I go build something on Second Life, or talk to one of my neighbors about their day, or go visit a place someone has built. It’s not a game, it’s a 3D virtual environment, kind of like an international chat room with really great graphics. It’s free, it’s interesting, it takes very little energy and believe it or not I’m actually making a little $ selling things I’ve made. Note the LITTLE, $10 doesn’t go far in real life but does wonders for my ego!

Last night I sat at a beach bar I made and had virtual happy hour with a couple of friends in New Zealand and we compared “I”m so tired” jokes. Made me feel almost normal!

[url]www.secondlife.com[/url]

No I don’t work for them but it has been a place for me to go and learn new things and not feel like such a slug all the time.[/QUOTE]
I’ve saved the address to favorites and will look into it further. Seems interesting if not a bit confusing at first look. Although I have enough trouble managing my own life as it’s become. Funny, real life has almost taken on a surreal feeling over the past couple of years as is. I’m not liking it in the least. Thanks so much for the thought, I’ll have to delve further into it sometime soon.

Norb,
I use to live in Ft.collins and had a great neurologist:Dr. Tim Allen, he is very knowlegeable with CIDP and one of the best Dr. I have seen. I moved in 2004 so I don’t know if he is still in the area but he was with Poudre Valley Health System.
Lynette

[QUOTE=Lynette]Norb,
I use to live in Ft.collins and had a great neurologist:Dr. Tim Allen, he is very knowlegeable with CIDP and one of the best Dr. I have seen. I moved in 2004 so I don’t know if he is still in the area but he was with Poudre Valley Health System.
Lynette[/QUOTE]
Thanks, Lynette. I originally had an appointment with him but I cancelled when I discovered that his degree is actually a D.O. not an M.D. On the business card and in the phonebook it says M.D. but records from his school said D.O. I have a bias against D.O.’s and the discrepancy bothered me. This to me would have been a bad way to start a new relationship. I went with Dr. Tamara Miller instead, recommended to me by my primary doc. I’ll know next week it was a good choice.

Here what I found:

[I]Summary
Dr. Allen practices Neurology in Aurora, Denver, and Fort Collins, Colorado. Dr. Timothy Allen, a male, graduated from the University Of Co School Of Med with a DO and has been in the profession for 14 years. [/I]

Here is an article giving the difference between DO and MD

[url]http://www.princetonreview.com/medical/research/articles/decide/DOissues.asp[/url]

Sue

Thanks for the link, Sue. It was a good refresher for me confirming what I’ve read before. I just felt that especially with CIDP and variants I didn’t want to take any chances with a doc who might lean toward a holistic approach. There is in my opinion nothing wrong with this approach but I doubt that if used alone it would be very helpful in our case.

[QUOTE=norb]I am resurrecting this thread because I have a question. Like you fatigue has become a daily problem. I want to talk to the new neuro I’ll be seeing in 10 days and ask about a prescription. I did some research and came across Ritalin (methylphenidate). I don’t like the jittery feeling of stimulants (like too much coffee, never had amphetamine-like drugs, though). But Ritalin seems to be on the mild side.
Does any of you have any experience with it or any suggestions?[/QUOTE]
I have only heard of ritalin being used on hyper active
children.It actually calms them down.

I too suffer extreme fatigue. I have to nap everyday, sometimes more then once.

Thing is, I don’t do anything hardly anymore. In rehab, I left with complete arrangements for housekeeping and cooking set up as they felt I needed these things. (I live alone)

I have not asked the doc about taking anything for it. Right now, am still praying the plasma exchange will help me feel better. It is showing positive results in my nc/emg, only thing is, I don’t feel it yet. But am extremely grateful for the positive result. The IVIG didn’t work, nor the steroids.

I have the P.E. 6 days in a row each month. Seems I just about recover from the P.E. when it is time to start it again.

Norb, whatever you and your doc decide, I pray that it works to give you more energy. Please keep us posted.

Blu

[QUOTE=joe flaherty]I have only heard of ritalin being used on hyper active children.It actually calms them down.[/QUOTE]

I know. This is one of a number of drugs that have opposite effects on children. I don’t understand why that is but it is stimulant for adults with effects similar to amphetamines.

Norb I am on Concerta the 12 hour version of Ritalin. I take 72 mg and it is still not strong enough. I have a severe case of ADHD that is not under controlled. The medication helps me calm down more and focus more but still not strong enough. I was suppose to get referred to a DR who specializes in ADHD but I hear from somebody else(my counselor) that he may not be taking new patients.

Joe Adults have ADD/ADHD it is not recognized by all DRs. I also think the fatigue I get from my CIDP and other autoimmune problems is not helping matters.

Sue

[QUOTE=JohnC]Fatigue can be disabling from this disease. I have sleep apnea as well, and use a bi pap machine, but there is still fatigue.

If you wake up more tired than you were when you went to bed, then apnea may be an issue.

I have tried provigil in the past. Provigil is a CNS stimulant my neuro gives to MS and CIDP patients that have fatigue. It caused me to have pretty severe headaches so I only took it when I knew I had to push myself. Now, it seems the headaches are not guaranteed, but they do occur on occasion after taking it. Might be something to look into for those suffering from fatigue. Does anybody else take any kind of stimulant?[/QUOTE]
The august issue of Andrew Weils-self healing- has an article
about the use of American ginseng easing cancer fatigue.no specifics
are given however about dosage.

I’m sleeping as I’ve never done. During the week I have to wake up very early to go to work but at midday I have to have a “siesta” otherway I couldn’t face the afternoon. I sleep in the beach whenever I go, I fell asleep in everyplace I can. During saturday and sunday I get up, have my breakfeast and come back to bed, I’ve never done this in my life, 😮 but now I feel I need it, so I do it.

I’ve learned to listen to my body, when it ask me for rest, I rest. It tooks long time and a long effort to learn it, I used to do a lot of things at day and I never was tired, nowadays I’m always tired, most of things require a lot of efforts, but I just do as much as my body allowes me to.

Lourdes

I used to drink Ginseng tea in the afternoon and it would keep me awake for another couple of hours but it wreaks havoc on my intestines so I rarely drink it anymore. My doctor didn’t like the idea of me drinking ginseng tea either because of the unpredictable side effects.

I’ve learned to be careful of anything I put into my body from OTC meds to natural cures, with all the different meds I’m on. I got really ill from a Sobe drink, all it took was once. I’ve a great primary care and we decuss it first. She has me taking a few suppliments but it’s better to ask first.

I sometimes wonder what would happen if I stopped all the different medications I am taking and the couple or so drinks I consume every evening. 😮 Maybe the fatigue would go away :confused:

[QUOTE=norb]I sometimes wonder what would happen if I stopped all the different medications I am taking and the couple or so drinks I consume every evening. 😮 Maybe the fatigue would go away :confused:[/QUOTE]

It’s worth a try if you are speaking of alcoholic drinks. Alcohol is a depressant and combined with many medications just increases those effects. It also leads to a poorer quality of sleep and can linger on to the next day in people like “us”.

Good luck, I think it would be worth a try for a couple weeks and see if anything changes 😎

I know with thyroid acting up I was up all hours of the night and dozing all day with massive fatigue. Since I had this surgery I am not as sleepy during the day and sleeping all night now. Whew! Relief! But my body because of this nerve damages tires out easily. That is the only thing now I am trying to work on. Fatigue is not fun having every single day! Kills the body! Really does~

Stacey the only thing I could suggest is to cut back the hours at your workplace if possible. Also ask your husband to do more to help you and depending on the age of the stepdaughter when she is there she can help also. Rest is very very important listen to your body.

You don’t have the energy you had before the CIDP so you won’t be able to do as much as before. It is not easy to accept the death of your fomer self. Once you accept the new you you may feel more at peace.

I wish you the best

Sue

Stacey

Welcome to the forum. Like Sue said see if it is possible to get some help so you can get more rest. Hopefully, your husband will understand that he needs to help as much as possible. If he looks through some of the posting on this site it might help.

IVIg may help some

You will be in my prayers. Hang in there.

I’ve found that the balance issue is related to the numbness in my feet…..
As I’ve been getting more feeling in my feet my balance keeps improving.
When my feet were at their worst, if I was in a dark room I could not keep my balance at all. Without the feeling in the feet, being able to see is crucial to keeping balance. Hope yours improve.

Hopefully the balance issues will improve with the IVIG, but it may not do much for the fatigue. It seems most of us with CIDP are affected by fatigue, no matter how little the damage might be; but I do think that those of us with more severe cases probably get hit worse. I have had to have a cleaning woman ever since I came down with CIDP, had to quit my teaching job right away, moved into a smaller one level home, had to give up all of my sports (due to inability to walk, other than with a cane & AFOs.) But for me, this is my new “norm.” But fortunately my youngest was 21 when I got hit, so we have had empty nest now for over a year.

Gone are the days of 3 teenagers at home, all of their activities to attend, teaching full-time, cleaning a 4 story home, doing all of the cleaning, cooking, laundry, bills, grocery shopping, errand running. And the funny thing is I don’t remember being tired back then? Fatigue continues to be my hardest residual to deal with, trying to keep an even balance so that I do not overdue. Like today, my husband & I ran man errands in town, so when we got home I slept from 4:30-7:00 & he knew to make dinner. He understands, as it has been almost 5 years for me now. Get some help, so you can be more “there” for the family.

I live alone and can’t afford help around the house, the fatigue has been really bad so my doc put me on Provigil. I still take naps but it helps me not sleep the day away. Hopefully once you get started on the IVIg you’ll feel better. Best of luck!

Fatigue is so debilitating! I am post GBS 12 years and my husband just hired a cleaning lady for us. She only comes every other week and does the kitchen and bathrooms. It feels so good when it’s done! And my husband does the vacuuming. Even tho our 2 bedroom, 1200 sq. ft. apartment isn’t that big most days it “feels like it”! But my greatest frustration is not being able to do the gardens like I use to . . . Sue is surely right about the grieving!

I am surprised that Gene hasn’t been by to tell you “rest, rest and more rest”! That is how our nerves heal. There’s no way to know all of which nerves were damaged, so the “more healthy ones” are trying to do their job and the jobs of the hurt nerves. That’s the fatigue! If you don’t slow down and get help from others, you could end up “flat down” and then the others would have to do what you were doing anyhow.

Oops ~ didn’t mean to lecture ~ just wanted to save you from the same “not listening to and caring for my body” results that I still deal with. 🙁

I improve my fatigue since I started the full daily dose (6pills) of Qualivits Multivitamins. Before I was 2 or 3 pills.
The neurotin get the pain and paresthesias down, but not the weakness and fatigue. The only thing I found to fight fatigue is the antidepressant foxetin 50 mg daily and now the multivitamins.

Pablo, Uruguay