best stimulant in viral and nonviral CFS

which stimulant medication(s) do you take ?

  • US Desoxyn (N-methylamphetamine hcl)

    Votes: 0 0.0%
  • US Dexedrine, DE Attentin (dextro-amphetaminesulfate)

    Votes: 1 7.7%
  • US Adderall (levo/dextro-amphetamine salts)

    Votes: 4 30.8%
  • US Vyvanse, DE Elvanse (lisdexamphetamine dimesylate)

    Votes: 3 23.1%
  • US, CAN, DE... Ritalin, DE Medikinet, DE MethylpheniTAD (dextro/levo-threo-methylphenidate hcl)

    Votes: 3 23.1%
  • US, CH Focalin (dextro-threo-methylphenidate hcl)

    Votes: 2 15.4%
  • US, DE, NL... Strattera (atomoxetine hcl)

    Votes: 1 7.7%
  • US Provigil, DE Vigil, A, CH Modasomil, CAN Alertec (modafinil hcl)

    Votes: 6 46.2%
  • other

    Votes: 1 7.7%

  • Total voters
    13

Strike me lucky

Well-Known Member
hmm that's interesting. it's been 3 weeks since i started ritalin and now i experience a burning pain in my left arm muscle. without any activity.
could that be fibromyalgia or an increased autoimmunity by the ritalin?


Dont want to alarm you but left arm pain may be a sign of a heart attack. Chest pain doesnt have to be present. If your feeling short of breath or cold sweats you really need to see a dr or go to hospital. Not sure if you have any other risk factors though???

Take care
 

loki

Well-Known Member
Dont want to alarm you but left arm pain may be a sign of a heart attack. Chest pain doesnt have to be present. If your feeling short of breath or cold sweats you really need to see a dr or go to hospital. Not sure if you have any other risk factors though???

Take care

a heart attack ? that's cool! when i was on interferon with muscle spasms and passing out all the time the people here laughted at me. I won't tell them i have any pains because they will laugh again and when i can die quickly and clean through a heart attack all this has an end:smuggrin:
 

Paw

Well-Known Member
hmm that's interesting. it's been 3 weeks since i started ritalin and now i experience a burning pain in my left arm muscle. without any activity.
could that be fibromyalgia or an increased autoimmunity by the ritalin?
Here's a synopsis of what I've been discovering, in case it triggers any useful ideas...

For a long time now I've been puzzling over the dopamine-chain connection to my FM/ME.


I have neuropathies (small-fiber, peripheral, and autonomic), so, with me, my daily pain would usually progress from numbness and tingling (usually left-side dominate, but not totally; worse in the limbs and extremities). Through the day, as fatigue would set it, the tingling would turn into burning -- often all over, but, again, the left side got it the worst. The burning felt like a sunburn about a half-inch below the surface of the skin. Or maybe a bad niacin flush that doesn't go away.

Anyway, duloxetine (60 mg/night) takes the edge off fairly well. (Without it, I felt like I had the flu.) But, since everything gets worse in the evening (including bad RLS, arm flings, etc), I rely on cannabis before bed, as that's the most reliable med I've found to relieve the feeling of pressure building up under the skin.

I once read somewhere that males with FM often experience their pain more as burning and less as deeper myalgias (and tender points). I don't know if that's true, but over the past half year I've been getting severely debilitating myalgias that I first thought were injuries, but that the physical therapists are now attributing to FM. Meanwhile I've been getting less burning. So my working theory is that my FM has been evolving (or devolving?) into the joints and muscles more. Constantly stretching out those tissues seems to help (also traction/distraction maneuvers).

Anyway, the fact that I have such trouble tolerating tweaks to the dopamine chain makes me feel like I'm allergic to dopamine. So I feel like my body is relying instead on other forms of energy (glutamate, stress, adrenaline), leading to extreme fatigue and sickness.

I may be way off base with this theory, but I have been getting some positive results with n-acetyl cysteine and other supplements that promote healthy GABA-to-glutamate conversion. NAC is one of the few supplements that I really notice when I skip it.

I did well with bupropion (as a stim) for about six months -- making me think the problem was with dopamine-to-norepinephrine conversion (since bupropion targets norepinephrine mainly), but suddenly, one day, it stopped working and just left me with burning and fatigue. I'll try mini-doses one of these days, as I used to like it.

The biggest challenge with this stuff is that everything is always changing. As soon as you think you've found a stable protocol it's likely to abandon you. Or, at least, that's been my experience.
 

loki

Well-Known Member
Here's a synopsis of what I've been discovering, in case it triggers any useful ideas...

For a long time now I've been puzzling over the dopamine-chain connection to my FM/ME.


I have neuropathies (small-fiber, peripheral, and autonomic), so, with me, my daily pain would usually progress from numbness and tingling (usually left-side dominate, but not totally; worse in the limbs and extremities). Through the day, as fatigue would set it, the tingling would turn into burning -- often all over, but, again, the left side got it the worst. The burning felt like a sunburn about a half-inch below the surface of the skin. Or maybe a bad niacin flush that doesn't go away.

Anyway, duloxetine (60 mg/night) takes the edge off fairly well. (Without it, I felt like I had the flu.) But, since everything gets worse in the evening (including bad RLS, arm flings, etc), I rely on cannabis before bed, as that's the most reliable med I've found to relieve the feeling of pressure building up under the skin.

I once read somewhere that males with FM often experience their pain more as burning and less as deeper myalgias (and tender points). I don't know if that's true, but over the past half year I've been getting severely debilitating myalgias that I first thought were injuries, but that the physical therapists are now attributing to FM. Meanwhile I've been getting less burning. So my working theory is that my FM has been evolving (or devolving?) into the joints and muscles more. Constantly stretching out those tissues seems to help (also traction/distraction maneuvers).

Anyway, the fact that I have such trouble tolerating tweaks to the dopamine chain makes me feel like I'm allergic to dopamine. So I feel like my body is relying instead on other forms of energy (glutamate, stress, adrenaline), leading to extreme fatigue and sickness.

I may be way off base with this theory, but I have been getting some positive results with n-acetyl cysteine and other supplements that promote healthy GABA-to-glutamate conversion. NAC is one of the few supplements that I really notice when I skip it.

I did well with bupropion (as a stim) for about six months -- making me think the problem was with dopamine-to-norepinephrine conversion (since bupropion targets norepinephrine mainly), but suddenly, one day, it stopped working and just left me with burning and fatigue. I'll try mini-doses one of these days, as I used to like it.

The biggest challenge with this stuff is that everything is always changing. As soon as you think you've found a stable protocol it's likely to abandon you. Or, at least, that's been my experience.
yes, i experience the same. when the docs put me on a stable protocol it lasts about 2 months, then they have to switch the drugs. because of that they think i'm a hypochondriac... i wish i was one. well, i feel as i lost 75 IQ points since i started to take Ritalin. On monday i get (hopefully) switched to Dexedrine, which is somewhat more gentle to the nerves.... god i feel so crappy
 

Strike me lucky

Well-Known Member
a heart attack ? that's cool! when i was on interferon with muscle spasms and passing out all the time the people here laughted at me. I won't tell them i have any pains because they will laugh again and when i can die quickly and clean through a heart attack all this has an end:smuggrin:


Whatever that has to do with the price of bread.
 

Merida

Well-Known Member
Aren't we amazing!!! I can't even believe"me." I am glad our survey choices were limited to 4 choices. ;)
Nuvugil helps more than Provigil for me. Not as many headaches. Yes, I have heard from many that medical marijuana helps.

I got a prescription and had my first experience at age 65. Ha!!! I tried the edibles - " Martha Stoner's Ripped Krispies." I wondered how anyone could take this medicinal use seriously with a brand name like that! I was the oldest "dudette" in the store. One young male customer smiled at me and said , " Enjoy your medication."

So I ate 1/2 of a Ripped Krispy and was sick all night - nausea, severe dizziness, horrible. :hungover:
 

Merida

Well-Known Member
i too discovered tea as being quite gentle to my immunity but i do not trust independent, cheap tea leafs. i trust intransparent ultracapitalistic pharma giants !!! :oops::eggonface:
@loki
Yes, black/ green has theophylline in it - used in asthma treatment. I had terrible asthma after a virus in 1988. Tea was calming and helpful - didn't know why then.
 

Tina

Well-Known Member
I took Modafinil for about six weeks. I was feeling pretty bad before I started. I cannot say if it made my crash period worse or not, what I can say is it did not help in anyway that was noticeable. My doctor just recommended Ritalin, but I am very wary of trying anything else. I have two children who depend on me and I need to be able to drive.
 

kamodio

Member
Aren't we amazing!!! I can't even believe"me." I am glad our survey choices were limited to 4 choices. ;)
Nuvugil helps more than Provigil for me. Not as many headaches. Yes, I have heard from many that medical marijuana helps.

I got a prescription and had my first experience at age 65. Ha!!! I tried the edibles - " Martha Stoner's Ripped Krispies." I wondered how anyone could take this medicinal use seriously with a brand name like that! I was the oldest "dudette" in the store. One young male customer smiled at me and said , " Enjoy your medication."

So I ate 1/2 of a Ripped Krispy and was sick all night - nausea, severe dizziness, horrible. :hungover:
I have found medical cannabis to be very helpful for pain, insomnia, nausea (from herx rx) and other symptoms. Even so, I rarely use it - I still have mom guilt about using weed! But I avoid edibles. They can be way too strong unless you make them yourself and know how your body responds to whatever you're using and you can control the dosage. Most dispensaries have helpful people who know their products and can give guidance based on your symptoms and desired outcomes. Don't be shy about asking for help. Sending you wishes for relief ~
 

IrisRV

Well-Known Member
I took Modafinil for about six weeks. I was feeling pretty bad before I started. I cannot say if it made my crash period worse or not, what I can say is it did not help in anyway that was noticeable.
Modafinil was all my GP would prescribe when he first diagnosed me with 'CFS'. No, wait, he was also willing to prescribe an AD that he said would help with the muscle aches. My response to modafinil was just like @Tina's. It probably made me worse, and certainly did not help in any way.

I kept telling him I didn't need to be more alert, I needed to be less physically exhausted. He didn't believe me. But then he also thought CFS and FM are the same thing.
 

loki

Well-Known Member
Modafinil was all my GP would prescribe when he first diagnosed me with 'CFS'. No, wait, he was also willing to prescribe an AD that he said would help with the muscle aches. My response to modafinil was just like @Tina's. It probably made me worse, and certainly did not help in any way.

I kept telling him I didn't need to be more alert, I needed to be less physically exhausted. He didn't believe me. But then he also thought CFS and FM are the same thing.
that seems to be the problem in nearly any case of stimulant usage in CFS/ME. The stims seem to exaggerate the immune responses and that makes you tired. It's like puring gas in a fire. What should be the answer? Combination of prednisolone and stims? I should ask for a new doctor...
 

loki

Well-Known Member
Here's a synopsis of what I've been discovering, in case it triggers any useful ideas...

For a long time now I've been puzzling over the dopamine-chain connection to my FM/ME.


I have neuropathies (small-fiber, peripheral, and autonomic), so, with me, my daily pain would usually progress from numbness and tingling (usually left-side dominate, but not totally; worse in the limbs and extremities). Through the day, as fatigue would set it, the tingling would turn into burning -- often all over, but, again, the left side got it the worst. The burning felt like a sunburn about a half-inch below the surface of the skin. Or maybe a bad niacin flush that doesn't go away.

Anyway, duloxetine (60 mg/night) takes the edge off fairly well. (Without it, I felt like I had the flu.) But, since everything gets worse in the evening (including bad RLS, arm flings, etc), I rely on cannabis before bed, as that's the most reliable med I've found to relieve the feeling of pressure building up under the skin.

I once read somewhere that males with FM often experience their pain more as burning and less as deeper myalgias (and tender points). I don't know if that's true, but over the past half year I've been getting severely debilitating myalgias that I first thought were injuries, but that the physical therapists are now attributing to FM. Meanwhile I've been getting less burning. So my working theory is that my FM has been evolving (or devolving?) into the joints and muscles more. Constantly stretching out those tissues seems to help (also traction/distraction maneuvers).

Anyway, the fact that I have such trouble tolerating tweaks to the dopamine chain makes me feel like I'm allergic to dopamine. So I feel like my body is relying instead on other forms of energy (glutamate, stress, adrenaline), leading to extreme fatigue and sickness.

I may be way off base with this theory, but I have been getting some positive results with n-acetyl cysteine and other supplements that promote healthy GABA-to-glutamate conversion. NAC is one of the few supplements that I really notice when I skip it.

I did well with bupropion (as a stim) for about six months -- making me think the problem was with dopamine-to-norepinephrine conversion (since bupropion targets norepinephrine mainly), but suddenly, one day, it stopped working and just left me with burning and fatigue. I'll try mini-doses one of these days, as I used to like it.

The biggest challenge with this stuff is that everything is always changing. As soon as you think you've found a stable protocol it's likely to abandon you. Or, at least, that's been my experience.
Look at this:

Levodopa reverses cytokine-induced reductions in striatal dopamine release.

from the abstract:
These findings suggest that inflammatory cytokines reduce the availability of dopamine precursors without affecting end-product synthesis or vesicular packaging and/or release and provide the foundation for future studies investigating therapeutic strategies that facilitate availability of dopamine precursors to improve depressive symptoms in patient populations with increased inflammation.


That has clearly something to do with what you proposed! You are just not allergic to dopamine, you don't have dopamine! What does that mean for antidepressants like bupropion? These drugs are reuptake inhibitors, i think you know what the technique here is, so, how to reuptake a transmitter when there's no transmitter around? I don't know how, but that doesn't mean something good, i can tell you! So, be careful when choosing stimulants, choose one with DOPAMINE RELEASE PROPERTIES like amphetamine derivatives. these reuptake AND release.

Since it seems that interferons mess around with transmitters, why not combine a (good and dopamine similar) stimulant like dextroamphetaminesulphate with a glucocorticoid like prednisone to have a higher transmitter level with a reduced inflammation? and i mean to be very careful with dosages, these two drugs have tight regiment dosage zones (sorry for my english).

IrisRV:
No, wait, he was also willing to prescribe an AD that he said would help with the muscle aches. My response to modafinil was just like @Tina's. It probably made me worse, and certainly did not help in any way.

wikipedia modafinil:
Of the sites tested, it was found to significantly affect only on the dopamine transporter (DAT), acting as a dopamine reuptake inhibitor (DRI) with an IC50 value of 4 μM.[48]
It seems like modafinil is a DRI (dopamine reuptake inhibitor) which implies that it is mainly useless for CFS/ME if CFS/ME is driven by a disregulation of the immune system. This is responsible for your feelings, a low dopamine level and a chemical that blocks reuptake inhibition. Sand in the gear wheel box.
 
Last edited:

loki

Well-Known Member
funny: i got prednisolone today and it gives me more power than ritalin and every nootropic combined
 

Paw

Well-Known Member
Look at this:

Levodopa reverses cytokine-induced reductions in striatal dopamine release.

from the abstract:



That has clearly something to do with what you proposed! You are just not allergic to dopamine, you don't have dopamine! What does that mean for antidepressants like bupropion? These drugs are reuptake inhibitors, i think you know what the technique here is, so, how to reuptake a transmitter when there's no transmitter around? I don't know how, but that doesn't mean something good, i can tell you! So, be careful when choosing stimulants, choose one with DOPAMINE RELEASE PROPERTIES like amphetamine derivatives. these reuptake AND release.

Since it seems that interferons mess around with transmitters, why not combine a (good and dopamine similar) stimulant like dextroamphetaminesulphate with a glucocorticoid like prednisone to have a higher transmitter level with a reduced inflammation? and i mean to be very careful with dosages, these two drugs have tight regiment dosage zones (sorry for my english).

IrisRV:


wikipedia modafinil:

It seems like modafinil is a DRI (dopamine reuptake inhibitor) which implies that it is mainly useless for CFS/ME if CFS/ME is driven by a disregulation of the immune system. This is responsible for your feelings, a low dopamine level and a chemical that blocks reuptake inhibition. Sand in the gear wheel box.
Yeah, that is interesting. I've tried just about every kind of combo in the dopamine chair there is (including precursors and l-dopa in the form of mucuna) -- but every time the same reactions return, even if after brief periods that seem productive.
But I have never looked into prednisolone or steroids of any sort. You've piqued my interest.
 

loki

Well-Known Member
Prednisolone seems like a damn bright light in this damn darkness... it has it's downsides but of course, it's a powerful drug and you cannot adjust systemic immunity with just tylenol, sadly:)
it's important to find the lowest dose possible. i started with 20mg and now take 15mg. tomorrow i will try 10mg (where it comes close to just hormonal therapy or how it's called in the sheet). i mean, staying between 10 and 15 will not open the gates of hell (respectively).
 

Justarose123

Active Member
I'm on 20 mg of Adderal x3 daily.
I started at 5 mg I believe but that was years ago, I can honestly say without them I would be bedridden..why you may ask? Because that's how sick I had become before them. I barely left my room it took all my energy to get up and shower or to fix my self something to eat. I ends up hydrated many times, but I seem to do well on the adds I did try Provigil it helped me focus but not the physical energy at all and that was on 100mg I wasn't approved by my insurance so here I am? Vyvance I did like. It was smooth and wore off easy, Oh I did try Ritalyn it was just so week ..compared to Adderal and I couldn't function as well, to bad about that, but my doctors always said I have a high tolerance for medicine...antidepressants were most people were on 20mg I was on Prozac 60-80 mg Zoloft on 450 that was at the same time. When I went on the 20 mg dose of Adderal I stopped the antidepressants, I am looking to buy Wallace fisher device as before I became sick I never used daily pills, prescribed or not! I do yoga and meditate a lot thanks to the focus, but I would give up all my Meds for a cure in a second. I worry because I know if you don't pace yourself you will crash , but I'm pass that .I know my body when it speaks I listen, I've always had insomnia my illness started with it, all I know is I'm dammed if I do- stop Meds =bed either way because As I said I was bedridden to begin with. I do have CMT a neurological inherited desease, acquired hypopituitism which throws your whole body out of whack. My igf1-37 should be between 300-400 so without the growth hormone I'm weak. I've also tested with high tilters to EBV reaction. It seems so many combined things. In beginning was hurt feet, calf pain, tingly fingertips that went numb, but not to bad, then low vitamin D severely deficient -still am, then car accident -whip lash , and mild TBI,
 

Justarose123

Active Member
Then came pain. Pain non stop excruating all night and day long, I continued to work at desk which I believed made it worse, The insomnia was ongoing for a year by then the pain had spread to my feet swelling them up at night , red angry looking viens popping out of my feet, I had both feet operated on the same day, 3 months later I acquired MRSA from helping a patient into a wheel chair, more pain in my hips , bones , vomiting, my thoracic was horrible had Mri's on it and said it was fine, had X-ray and it showed congenital fusion? The MRSA took me 3 rounds of Iv Meds and 3 rounds antibiotics at home, but still kept eating away at the skin on my ankle. when they decided to operate on it, finally it cleared up, started Savella a few months later, rented a quiet living environment where I decided to sleep when I could. Day , night. Half night ,all day, naps all lead to 3 year remission! Yay it felt good to.
First thing I noticed in the apartment was there was no stress or drama around me. Very important to heal I believe. 2nd I was sleeping on a schedule like a baby couldn't stay awake after 8 most nights I was up at 3:00am but I just accepted it. Didn't stress and napped the next day, no skipping naps didn't help me sleep longer, anyway I enjoyed 3 happy years all the more for being sick, Even though I was only 90% I loved it!
Until I got pneunomia and that was it, it was back in full, pain not as bad , my neck (Mri's showed multi level stenosis) was good, my arms and legs were weak, clumsy ,but lots low pain, but the fatigue was immensive. I could barely function, and that's when I found out I had EBV with high tilters in my blood work, and hypopitituary and hypothyroid. Along with CMT neurological genetic desease, and now 3 years later I still shots and mega doses daily my vitamin D still deficient, now my iron is deficient, pottasium, magnesium, exc, ..I am just glad for the test to see if it's really fibro/Me or if something else like my hormones and vitamin deficiency is causing it all,
years go by, yet time stays still, please find me a cure, for I'm surely sick of being ill.....sorry I talked your heads off...it just spilled out... Cross our fingers, we have hope, were we never did before, goodnight all , and be well...Sissy
 

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