Supplements for Nerve Pain

Here’s some of the findings from my research into supplements which may help with nerve pain and small fiber neuropathy. Some of the results are based on diabetic neuropathic pain but since my nerve damage pain (from surgery) and my allodynia have responded to one of those already (Alpha Lipoic Acid) it seems worth exploring others. I’m also experiencing anxiety as a new symptom so have paid particular note to that and things like brain chemistry – this is not extensive research and doesn’t cover every aspect.

Some of the information given such as dosage is conflicting. I’m just recording what I’ve found through research and there isn’t always a clear answer. Sorry I didn’t have the energy to link to all the sources for the info I’ve noted.

Updated 24th March 2018

For Nerve Pain:

Alpha Lipoic Acid

Inositol

Acetyl-l-carnitine

L-Theanine

D-L-Phenylaninine

Palmitoylethanolamide / PEA

L-Tryptophan

Resveratrol

Passion Flower / Passiflora

NAC or N-acetylcysteine

Turmeric / Curcumin

Quercetin

Also important for nerve repair and function:

Magnesium

Omega 3

GLA / Gamma-linolenic acid

Vitamin D

Vitamin B12

Thiamine B1 or Benfotiamine

Vitamin B6

CoQ10 (CoEnzyme Q10)

Alpha Lipoic Acid

Good for:

Nerve pain, allodynia, weight loss, diabetes, anxiety, dementia, healing wounds, migraines

Action:

Antioxidant that kills free radicals.

Alpha-Lipoic Acid has been shown to boost acetylcholine (ACh).

May increase nerve regeneration rates secondary to nervous system injury.
The combined robust antioxidant, neuroprotective and especially metabolic actions facilitate strong effect on cognition, memory and delaying mental fatigue.

Improves the function and conduction of neurons in diabetes. Improves the flow of blood to the nerves allowing them to use energy effectively.
Potent antioxidants for biological reactions taking place in the mitochondria of our cells.

Regulating blood sugar and insulin. Improves lipid profiles (cholesterol, triglycerides, and high/low density lipoproteins) and reduces plaque formation in arteries.

Side effects/Risks:

Might get a rash. In humans, doses of 1800mg/day and 2400mg/day failed to have any side effects over a 6-7 month period.
Nausea (deemed minor and related to appetite suppression) and an itching sensation of the skin associated with higher (1,200-1,800mg) doses.
Toxicity at 3-5g of ALA a day inducing mineral deficiencies.
People at risk for thiamine deficiency should take a thiamine supplement (particularly heavy drinkers).
People with diabetes should be careful to check their blood sugar levels because alpha-lipoic acid might lower blood sugar.

Contraindicated with chemotherapy.
May interfere with thyroid medications (can affect the conversion of T4 into T3).

Increased risk of developing (very rare) IAS (insulin autoimmune syndrome) resulting in low blood sugar (hypoglycemia) in individuals with a specific genetic variation – hypoglycemia resolved once the alpha lipoic acid was stopped.

Symptoms of high acetylcholine – ACh can act like a stimulant by releasing norepinephrine (NE) and dopamine (DA).  However, those brain chemicals are used up (depleted) in the process; and a deficiency can occur. Too much ACh relative to other brain chemicals such as serotonin (SE), NE, and DA has an adverse effect on brain function. This is because in larger quantities ACh acts like an inhibitory neurotransmitter, causing increased nervous system inhibition (depression). Important to remember is that, in general, as ACh levels go up in the brain, the levels of the other brain transmitters go down. In terms of mood, the combination of higher ACh and NE, together with lower SE, produces anxiety, emotional lability, irritability, anger, aggressiveness, negative rumination, impatience, and impulsiveness (among other things).

Dosage:

Between 100mg to 600mg per day for its antioxidant benefits.
Neuropathic pain 600mg or 1200 mg daily.
For diabetes or bodybuilding may benefit from higher doses up to 1200mg. High doses should be split and taken throughout the day.

One trial demonstrated at doses of 600mg 3 times daily for a 3 week period led to very significant improvements in neuropathic symptoms. Another trial found that a dose of just 600 mg a day taken for 4 years improved symptoms and slowed down the progression of neuropathy.

Inositol

Good for:

Nerve pain, anxiety, panic, cholesterol, weight loss, PCOS, OCD

Action:

Works in the nerves involved with cellular signaling. Mediates 5-HT (serotonin) activation within nerve cells.

Serotonin, Dopamine, Norepinephrine, and Acetylcholine are primary messengers, transmit messages from one neuron to receptors on another neuron but rely on secondary messengers to complete the signal and relay information within the cells. Inositol is one of the key secondary messengers needed for successful signaling. Inositol, Dopamine, and Serotonin work together to maintain consistent hormonal balances within the brain.

Inositol helps boost serotonin and dopamine receptor density. Improving the effectiveness of serotonin, GABA, glutamate and dopamine neurotransmitters in your brain.

It increases Cholinergic as well as GABAergic activity.

May enhance natural energy, especially when taken just before any activity that will subject the body and mind to stress.

Some of its effects include healthy hair and controlling estrogen levels

Side Effects/Risks:

Water soluble so excess expelled. Minimal side effects. No withdrawal.
Possibly agitation, apathy, brain fog, decreased self-awareness, diarrhea, libido reduction, and sweating.
Can cause nausea, tiredness, headache, and dizziness.
Very safe supplement to ingest, and all side-effects associated with myo-inositol are merely mild gastrointestinal distress from high doses.

Most common side effects are loose stools at the beginning of supplementation, which resolve as your body gets used to inositol. Other reported side effects are nausea, headaches, fatigue and dizziness. Some people also notice increased sweating that usually resolves with time.

Dosage:

500-1,000 mg a day for nerve pain

In the range of 200-4,000mg once daily before breakfast; the higher dose seems to be used more often and seems more effective. Neurological usage of inositol tends to require higher doses, and while antidepressant effects have been noted as low as 6g at times the standard dose is between 14-18g daily

PCOS 4 g per day (divided into 2 grams twice daily)

Anxiety/Panic between 12 grams and 18 grams per day (build slowly)
Depression 12 grams daily. This dose has been shown to improve the symptoms of depression after 4 weeks.

Acetyl-l-carnitine

Good for:

Nerve pain, nerve damage, depression, weight loss, blood sugar, muscle disorder, heart conditions, cholesterol, hyperthyroidism

Action:

An amino acid that improves diabetic neuropathy. Supplementing with carnitine might help increase insulin resistance, allow the cells to utilize glucose effectively and boost nerve regeneration.

Alleviates symptoms, particularly pain, and improves nerve fiber regeneration and vibration perception in patients with established diabetic neuropathy.
It works to regenerate myelin sheathing of nerves, produce new nerve fibers, and improve the function of important nerve connections to organs.

Glutamate is a neurotransmitter that is significantly involved in pain transmission including neuropathic pain.  Glutamate receptors are proteins that bind to glutamate for supporting its function. These receptors when activated relieve neuropathic and inflammatory pain. Acetyl-l- carnitine activates with these glutamate receptors to relieve neuropathic pain.

Acetyl L-carnitine acts as an antioxidant. Able to cross the blood-brain barrier.
Supports acetylcholine and dopamine levels. Increases norepinephrine in the hippocampus and serotonin in the cortex. Supporting norepinephrine and serotonin in the brain can help with depressive symptoms as well as cognitive deficits.May reduce amounts of GABA and increase myo-inositol . May alter monoamine neurotransmitter levels.

Side Effects / Risks:

Diarrhea, nausea, stomach pain, vomiting. Headaches. Over-stimulation. Trouble sleeping. Raise blood pressure. Lower blood sugar and higher triglycerides (in people with diabetes). Psychosis in people with bipolar disorder.

May increase the risk of seizures in those with epilepsy.

Warnings for people with hypothyroidismperipheral vascular disease, high blood pressure, liver cirrhosis, alcoholism, diabetes, kidney failure, digestive problems, risk factors for mental illness, hepatitis C (fatigue may worsen).

Warning with blood-thinning drugs, beta-blockers, calcium-channel blockers. May interact with drugs or supplements that lower blood sugar. It may affect how your body breaks down certain drugs and supplements.

Dosage:

500 mg or 1,000 mg three times daily

As per the research studies, the beneficial dose of acetyl-L-carnitine is 1000-2000mg daily. Start with a small dose (500mg daily) and scale up gradually; a dose of 1000mg -1500mg per day should help.

L-Theanine

Good for:

Nerve Pain, Anxiety, Sleep, lowering blood pressure, cholesterol

Action:

Naturally occurring amino acids. L-Theanine increases brain serotonin, dopamine, and GABA levels.

A mild stimulant for glutamate receptors and keeps glutamate from full activation, which acts to tame excitotoxicity.

Increases alpha brain wave activity, especially for those people who suffered from prior anxiety. Brain waves are actually smoothed out—but not flattened out.

Prevents the abrupt rise in blood pressure that some people experience under stress.

Unlike prescription anti-anxiety drugs, L-theanine relieves stress without causing drowsiness or impairing motor behavior. In fact, studies show it improves alertness and attention.

Theanine may boost the activity of T cells that protect against infection and tumors.

Side Effects/Risks:

More likely to occur at higher doses. Headaches. Dizziness. Reduction of appetite. Lowering blood pressure. Slight gastrointestinal discomfort.  Nausea.

Very high doses of L-Theanine may result in a fairly strong sedative effect.

As it  it indirectly interacts with GABA receptors you may want to avoid using a Theanine GABA combination.

While L-theanine also has the potential to increase serotonin levels in the brain, it has occasionally been shown to decrease them as well.

Contraindicated in chemotherapy.

Dosage:

For neuropathy 200 mg three times a day, taken 30 minutes before meals. This can be increased to 400 mg three times a day if needed.
For anxiety 200mg two to three times daily

D-L-Phenylaninine

Good for:

Chronic Pain, Depression, Vitiligo, (ADHD), Parkinson’s disease

Action:

DL-Phenylalanine is a combination of D-Phenylalanine and L-Phenylalanine, two different forms of Phenylalanine. D-Phenylalanine is a laboratory-made substance that has been studied for potential pain-relief effects. It has great effects and is especially useful in supporting your natural pain-relief system. L-Phenylalanine is an essential amino acid and is required for your body to function correctly. L-Phenylalanine deficiency is linked to lowered mood and feelings of stress. Higher doses of L-Phenylalanine may have the potential to improve your mood and focus.

DL-phenylalanine appears to improve chronic pain symptoms through up-regulation of your endogenous analgesia system. Your EAS is a neural system that suppresses nerve transmissions in your pain pathways. Thus, the EAS is responsible for reducing pain sensations.

Inhibits the breakdown of endorphins. Endorphins are pain-relieving compounds that originate within your body.

Phenylalanine is needed to produce certain neurotransmitters, including dopamine and serotonin.

Research has indicated that migraine, joint pains, neuralgia and even postoperative pain respond to DLPA, and it has been reported to reduce inflammation. DLPA does not deaden normal sensation even when taken for a lengthy period.

Side Effects/Risks:

Very well tolerated and for the most part side effects free. DL-phenylalanine side effects include nausea, headaches and heartburn. Both DLPA and l-phenylalanine can cause migraines or slightly increase blood pressure.

Some common side effects include anxiety, jitteriness, or hyperactivity.

Rare side effects can include itching, mouth tingling, or swelling of the hands of the feet (these are rare).

Can worsen tardive dyskinesia — involuntary movements — if you are currently taking anti-psychotic medication. You should not take DL-phenylalanine if you are on anti-psychotic medication. DL-phenylalanine may interact with a class of antidepressants known as monoamine oxidase inhibitors.

Contraindicated for Levodopa used for Parkinson’s disease, MAOIs, medications for mental conditions might cause jerky muscle movements.

Dosage:

The most common range is 750mg to 3,000 mg daily. Studies have shown highest efficacy for depression utilized doses of 50mg to 200 mg per day.

The dose of DLPA needed may vary from person to person, and is generally determined by starting with perhaps 1,000 mg daily for two weeks and then gradually increasing to a level that provides relief. If 3,000 mg per day doesn’t work after a month’s time, it probably will not work at all. The good news is that persons reporting pain relief will generally be able to LOWER their dose gradually and will often be able to maintain pain-free status with less DLPA than before.

Palmitoyalethanolamide aka PEA

(Not to be confused with Phenylethylamine which is also known as PEA)

Good for:

Chronic Pain, Nerve Pain, Joint Pain, Migraine, Fibromyalgia, Chronic Regional Pain Syndrome (CRPS), Small Fiber Neuropathy,

Action:

Naturally occurs in the body. It stops pain and inflammation, protects the heart, and improves brain function. Pain suppressant and anti-inflammatory. Clinical trials have found that the compound’s action performs numerous biological functions related to chronic pain.

It has been found to have anti-inflammatory, anti-nociceptive, neuroprotective, and anticonvulsant properties.

Binds to a receptor responsible for regulating the gene networks connected to the control of pain.

While PEA is not technically an endocannabinoid, it often gets grouped into the family; particularly with anandamide, because PEA operates via similar metabolic and synthetic pathways.

PEA is the key to suppressing overactive mast cells. Mast cells release inflammatory histamine and cytokines into the body.

The action mechanism of PEA is strengthened by complementary action mechanisms of the selected B vitamins.

Studies with mice using PEA found less injury to heart tissue, decreased cell death, and lower levels of cytokines.

Side Effects/Risks:

To date, no drug interactions have been reported in the literature, nor any clinical relevant or dose-limiting side effect.

Rarely gastrointestinal upset and diarrhea with the sublingual preparation, probably due to the sorbitol in it. No side effects with PeaPure.

No adverse reactions with other commonly used pain relievers such as tramadol, pregabalin, gabapentin, amitriptyline, and duloxetine.

Dosage:

6 weeks with 600 mg tablets twice daily. Once 50% reductions in pain are seen reduces the dose to 300 mg twice daily.

or: CRPS: Start 3 x 400mg either over 3 doses or split into 2 in morning and 1 in evening. After some weeks you could increase to 6 x 400mg

The analgesic effects are build up day by day; most people notice the effects within 1 week, but sometimes 6-8 weeks is required, especially for chronic pain syndromes.

PeaPure:  It has been proved that taking 1 capsule of 400 mg 3 times a day during the first 2 months is a good starting dosage. PeaPure users usually notice an improvement during the first few weeks.  Only after two months, the effectiveness of PeaPure can be properly evaluated. From that moment on it will become clear whether it is worthwhile to continue to take PeaPure for a prolonged period of time. If, after 2 months, the desired effect has been achieved, the dosage can be reduced to 1 capsule of 400 mg 2 times a day.

Starting from 4 months you can consider:
–    to continue the dosage of 1 capsule 2 times a day
–    to reduce the dosage to 1 capsule 1 time a day
–    to stop taking PeaPure.

If the result decreases after reducing the dosage, it is advisable to increase the dosage again to 1 capsule 2 or 3 times a day.

or: General palmitoylethanolamide dosing guidelines are as follows:

  • Initial dose: 1200 mg per day, with or without food, for the first 6 weeks.
  • Maintenance dose: 600 mg per day, with or without food.

L-Tryptophan

Good for:

Anxiety, Insomnia, fibromyalgia, sugar/carb cravings, binge eating, migraines, PMS, dementia

Action:

The amino acid, L-tryptophan, carries information throughout the nervous system and promotes emotional calmness. Our bodies convert it to 5-HTP (5-hyrdoxytryptophan), and then to serotonin, melatonin, and vitamin B6 (nicotinamide).

Serotonin is an important neurotransmitter with a major role in sleep, pain, and appetite, and it affects conditions like depression and anxiety. It influences pain thresholds through interacting with other compounds involved in the sensation of pain, like substance P and endorphins.

Side Effects/Risks:

Drowsiness, agitation, nausea, dizziness, headache,  lightheadedness, loss of appetite and muscle tenderness, gut symptoms,

Between 1988-1999, an EMS outbreak prompted the FDA to recall and cease over-the-counter tryptophan supplements. However, this was because one company in Japan that made synthetic tryptophan altered their creation process, which caused the outbreak. After this was caught and fixed, the FDA lifted the ban in 2001

Contraindicated for MAOI, iproniazid, liver disease, kidney disease. Anti-cough drugs such as dihydrocodeine, noscapine, and dextromethorphan increased cough resistance.

Dosage:

  • for sleep disorders/insomnia: 1–2 grams taken at bedtime
  • for chronic pain or migraines: 2–4 grams per day in divided doses
  • for treating PMS or PMDD: 2–4 grams daily
  • for helping to alleviate depression or anxiety: 2–6 grams daily (it’s best to work with a doctor)
  • for lowering appetite and cravings: 0.5–2 grams daily

While the usual dosage of L-tryptophan is 500 mg, many people take more and supplement’s instructions recommend 3 pills before bedtime.

Less than 8 grams per day for 8 weeks shouldn’t produce any side effects.However, an upper limit for tryptophan supplementation is still uncertain

Resveratrol

Good for:

Nerve pain, allodynia, anxiety, cholesterol, lowering blood pressure, arthritis, diabetes or prediabetes

Action:

Suppresses currents along sodium channel for analgesic effect. Inhibits inflammation. Regulates levels of nerve growth factors and lowers oxidative stress.
Known to stimulate norepinephrine release at a moderate level. Resveratrol is also an MAO-Inhibitor and a serotonin agonist. As such, it may improve mood, reduce anxiety and even lead to better sleep quality. Promote better circulation.

Side Effects/Risks:

At high doses, it may cause gastric side effects such as nausea and diarrhoea. One study has noted side effects such as a headache, skin rash and common cold-like symptoms.
Caution in bleeding disorders.

Blocks some enzymes that help clear certain compounds from the body. That means some medications could build up to unsafe levels. These include certain blood pressure medications, anxiety meds and immunosuppressants.

In some situations, high doses of resveratrol boost the activity of estrogen, in others they block estrogen. That makes resveratrol supplements iffy for women with cancer of the breast, ovary, uterus, or other estrogen-sensitive tissue, those trying to become pregnant, or those taking an oral contraceptive.

Dosage:

500-1000mg daily of resveratrol has been evaluated in clinical studies.

Typically taken in about 250 to 500 milligrams/day dosages. It’s important to point out that this is generally lower than the amounts that have been shown to be beneficial in studies, but it’s not clear if taking very high doses is safe.

Passion Flower / Passiflora

Good For:

Nerve pain, allodynia, anxiety, Fibromyalgia, sleep, Parkinsons, lowering blood pressure, menopause (hot flashes/night sweats)

Action:

Increases levels of gamma aminobutyric acid (GABA) in the brain. Contains compounds called beta-carboline harmala alkaloids which act as natural MAO (monoamine oxidase) inhibitors. MAO inhibitors aid in the metabolism of feel-good neurotransmitters serotonin and norephinephrine.
Shown to have anti-inflammatory, anticonvulsant and antispasmodic properties.

Side Effects/Risks:

Drowsiness. Dizziness, confusion, irregular muscle action and coordination, altered consciousness, and inflamed blood vessels. There has also been a report of nausea, vomiting.
More serious side effects include irregular heartbeat, loss of coordination and liver damage
Passionflower can affect the central nervous system. It might increase the effects of anesthesia and other medications on the brain during and after surgery.
Contraindicated with sedative medications, blood thinners, MAOs and blood pressure medication

Dosage:

The capsules usually come in 200-400 mg doses taken two to three times a day.
Between 250 mg to 2,000 mg of the raw herb three times daily.

For anxiety 200-300 mg of a standardized extract, twice a day.

NAC or N-acetylcysteine

Good for:

Nerve pain, cholesterol, CRPSAction:
Increase glutathione synthesis in the liver. Fights oxidative stress. Reduces inflammation.  Regulates neurotransmitter levels. Normalises mitochondrial function, which can repair and restore nerve function in case of nerve damage.

Side Effects/Risks:

Adverse reactions are normally limited to diarrhea, headache, nausea and/or vomiting
Contraindicated kidney stones and stomach ulcer. Contraindicated with nitroglycerin.

Warning for bleeding disorders.

Dosage:

About 500 mg to 1800 mg per day . Two human studies have used 1200mg N-acetylcysteine 1-2 times a day for peripheral neuropathy and neuropathic pain treatment. High dose NAC can have side effects; the dose range of 2-2.4g/day is safe and effective in most conditions. Start with a small dose and increase gradually to identify a dose that suits you.

Most research also indicates that it is essential to take 500 mg of Vitamin C to prevent kidney stones.

Turmeric / Curcumin

Good for:

Allodynia, nerve pain, anxiety, depression, arthritis, IBS

Action:

Antinociceptive pain blocking in neurons. Anti-inflammatory and antioxidant properties. Epigenetic agent having a positive impact on gene expression primarily by influencing methylation.
Elevates neurotransmitters such as serotonin, while lowering stress hormones, such as cortisol.

Side Effects/Risks:

Some research suggests the potential for liver toxicity. Possible side effects possible (at high doses) is gastric discomfort such as nausea, diarrhoea, constipation, bloating .
High in oxalates which is bad for kidney stones.
Warning for bleeding disorders.

Hyperactive gallbladder contractions.

Increased liver function tests.

Interacts with drug metabolising enzymes; please maintain a 3-4 hour gap between taking curcumin and any medication.

Dosage:

300-400mg 2-3 times a day for standardized 95% curcumin extract.
Neuropathy 500-1000mg of standardised 95% curcumin. Start with small doses such as 500mg per day for a week and then scale up gradually every week. Doses up to 8g have been found to be safe but a dose of 2g per day should suffice for severe cases.

Quercetin

Good for:

Nerve pain, allodynia, inflammation, allergies, cholesterol, heart disease, lowering blood pressure, prostrate

Action:

Fights oxidative stress. Inhibits inflammation. Can regulate immune responses and serve as a natural immunosuppressant in some conditions.
Can help in regeneration of nerve cells and promote neurite growth.
Civi et al. have found quercetin to be more effective than gabapentin and morphine in relieving nerve pain in a model of nerve constriction injury.

Side effects/risks:

Can cause headache and tingling of the arms and legs.

Please maintain a 3-4 hour gap between taking quercetin and any medications.
It may interact with certain medications: antibiotics, felodipine, quinolones, cisplatin, doxorubicin, digoxin, cyclosporine, corticosteroids and blood thinners.
Doses higher than 1g may cause kidney toxicity. It is advisable to take periodic breaks when taking quercetin supplements.

Dosage:

Depending on the severity of symptoms, 500-1000mg of quercetin for neuropathy.

Start with smallest dose available (250 or 500mg) and scale up gradually over weeks. Doses higher than 1000mg are not recommended. Cycling the dose or taking a break from quercetin intermittently is advised.
Quercetin supplements can be taken with other flavonoids such as curcumin, resveratrol or green tea catechins to get the benefits at a reduced dose.

 

Also Useful…

Magnesium
involved in muscle contraction, nerve conduction and muscle relaxation. May help relieve nerve pain by blocking certain pain receptors and acting as an anti-inflammatory in order to regulate pain.

Omega 3
building blocks of nerve tissue and are useful at high doses (6 grams daily) to reduce nerve inflammation.

GLA / Gamma-linolenic acid
omega-6 oil that has been studied and found to protect nerves from diabetes-induced injury high in evening primrose, borage and black currant oils. Anti-inflammatory

Vitamin D
can help to reduce the pain and inflammation associated with neuropathy, along with actually repairing the nerves and myelin sheath. Enhances the absorption of important minerals. Held to be integral to the healthy production and protection of neurotransmitters and other nervous system tissues.

Thiamine B1 or Benfotiamine
benfotiamine modulates the pathways that cause neuropathy. It regulates cellular damage caused by high levels of glucose and prevents vascular problems that also contribute to neuropathy. Several trials have demonstrated that benfotiamine taken at doses between 300 and 600 mg a day can significantly relieve the symptoms of diabetic neuropathy. Benfotiamine is often prescribed in Germany as a treatment for sciatica and other neuropathic pain complaints.

Vitamin B6
Benefits nerve function and synthesizes neurotransmitters like serotonin and dopamine

Vitamin B12
Vitamin B12 can extenuate nerve damage caused by neuropathy by activating a chemical signal, which helps nerves to regenerate. Restores blood flow which produces myelin synthesis, a fatty substance that protects the nerve fibers. Combinations of Vitamin B12 and 6 (methylcobalmin, folic acid and pyridoxal) have been found to improve symptoms and maintain the health of nerves in the extremities. Deficiency in B12 can contribute to peripheral neuropathy.

CoQ10 (CoEnzyme Q10)
plays an important role in addressing mitochondrial dysfunction, a condition that may result in nerve damage and pain. This supplement is also effective at neutralizing the threat of free radicals in the body.

Calcium
needed for the transmission of nerve signals between the brain and body

Zinc
essential for normal nerve function

 

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Nerve Pain

I continue to have pain at 3 of the sites of my keyhole surgery when my gallbladder was removed last August. My GP referred me to a gastro to double check nothing had been missed.

His theories were it could be:

1. Bile Salt Malabsorption causing new pain

2. An increase in my IBS symptoms

3. A stone remaining after surgery (we agreed the symptoms do not really fit for this to be it)

4. Nerve pain from the surgery

He’s sending me for a SeHCAT scan to check for Bile Salt Malabsorption with the offer of treatment if it is. I had already suspected I had a mild case of this as my motions are considerably looser than they were before. The treatment could be tricky though as I am inclined towards constipation. Anyway that test is happening soon.

We’ve established that food doesn’t influence the pain so I am very sceptical that anything except option 4 nerve pain is the diagnosis. It isn’t about the surgeon doing anything wrong particularly. It’s easy to stretch and damage nerves. And as someone whose nervous system was already heightened it’s a big risk factor for surgery. Something I didn’t know. But the surgery was absolutely necessary as my gallbladder was chronically inflammed and full of stones and I was very ill before I had it out.

Meanwhile I’ve been trying to find a supplement treatment for the nerve pain. I tried upping my dose of amitriptyline from 30mg to 40mg but the side effects scared me. I was scared of losing the benefit 30mg gave me so I dropped back straight away.

The pain is almost constant but varies from point to point. Some days just one area is hurting, some days they all join in. It’s wearing and depressing. I’m upset that my gastro’s letter to my GP minimises what is a very distressing condition for me by saying it doesn’t stop me doing things and inaccurately recording how it occurs. Sigh. Now that’s on my records forever. It’s always there, it moves around, it’s more intense some days, if I’m lucky I get a couple of hours off or where I can ignore it, then it’s always there again.

I had great success with daily 600mg of Alpha Lipoic Acid which after a week relieved the pain almost fully. It also helped massively with the allodynia of my waist which has meant I can’t wear anything touching my waist since 2016.  But I also had the worst anxiety and panic attacks I’ve ever had about 2-3 weeks into taking Lipoic Acid. I can’t help but wonder if the two are not connected. I stopped taking the Lipoic Acid and although the anxiety re-occurred without it my anxiety wasn’t as strong.

I’m now trying a lower dose to see if I can get the pain killing without increasing anxiety – *if* the two are even connected! It may be perimenopause and hormone inbalances. I tried 100mg, 200mg and am now at 300mg which makes some of the worst pain more bearable but it’s still ever present. It also helps a little with the waist pain. But I have had some panic symptoms since I upped the dose which may be connected.

I hate having to try and muddle through and now know what is causing what. If I seek help from my GP the answer would be straight forward to try me on Duloxetine as that could address both anxiety and pain and also help with my low level depression. But I am worried about the impact of taking such as a drug as it interacts with so many other medications and can be terrible to withdraw from. I had an awful time with withdrawal symptoms from Effexor another SNRI years ago before ME.

It would save me from 2nd guessing and I’d have someone to take some responsibility with me. But accessing GP appointments is very challenging for me and I find appointments and the whole system quite traumatic because of so many bad past experiences. I’m not confident I’d have an actively interested GP or even get to see the same one twice. Also they tell you to suck up side effects for up to a month which can include anxiety, headaches, pain. So on balance I feel I should continue to search for a less aggressive and fixed solution. And keep that option as a fall back.

I have other options I can explore in the supplements – inositol, l-carnitine, tumeric. It’s having the patience and time to experiment with each.

There is a cost implication in using supplements instead of prescriptions. But I control what I take and when. I can stop or adjust dosage as needs be. It’s just a long process to find the right fit and (as anxiety will do) I keep worrying if it’s the right course. That it would be easier to trust a doctor and throw some brain altering prescription at it rather than experiment at doing the same on my own. Figuring it out takes a lot of energy and focus.

No easy answer here. Aside from live with the pain.

 

Woman Stuff

I have a suspicion that peri-menopause may be upon me but being on Cerazette (progestrone pill) it’s difficult to know for sure. I’ve been experiencing anxiety with some panic attacks in a pattern and manner that feels hormonal. It’s a bit like being a teenager again in terms of the presentation of mood swings. Also things in my downstairs area are … not quite right.

I had a routine smear last year which was incredibly painful because the nurse discovered (read banged into) a cervical polyp. A GP referral to hospital had that removed on the day all very quick and easy. But it did add to my feeling of doom that I’m lumbering into middle age and things are inevitably going awry.

I had a recurrence of vulva itching recently and had treated it as a skin condition. When I had this last year it turned out to be a consequence of the thrush cream I had used to treat what I thought was fungal. So the antifungals made me more itchy than ever. But thrush had triggered the initial itch.

I’ve had another bout of thrush, which reminded me that I feel I basically have it more or less most of the time internally as I’ve been older. But it doesn’t often spread to external so maybe it’s just my normal to be uncomfortable sometimes.  Anyway seemed to be thrush this time so I treated with a pill 5 days ago. But in my reading found that vaginal dryness can be a factor for recurring infections. I don’t really want to take long courses of anti-fungals (despite stocking up from an online pharmacy to do just that!) so I did some reading to see if I could redress the balance another way and try to see off recurring infection.

I’ve started taking ordinary probiotics and am due to start probiotics specific to redressing female areas when my delivery arrives. I’m looking to take Lactobacillus rhamnosus and Lactobacillus reuteri specifically. These are available from Optibac and Jarrow as special female formulas but are pricey. I found a similar product from Swanson which contains other helpful stuff too.

Probiotics for Women – Lactobacillus rhamnosus and Lactobacillus reuteri

I’m also going to try a vaginal moisturiser. I looked for ages for natural stuff when I had the vulva itching and have used both Badger Nappy Balm and Diprobase. But for internal I had struggled to find anything that was full of stuff some articles said to avoid. Then by accident I found Multi-Gyn Actigel which not only is supposed to help boost your natural secretions but also prevents and treats bacterial vaginosis.

So for now probiotics and actigel. Hopefully that will make things happier and more comfortable.

Dysautomnia – Hunt for Help

I am much more knowledgeable about dysautomnia than I was when I last pursued a diagnosis in 2011. I’ve been wanting to pursue it for a long time but screening for gallbladder surgery has brought things to a head. My pre-op and subsequent ECG showed sinus tachycardia (and my blood pressure was a concern too). I was worried, knowing that tachycardia is a norm for me, but being someone who is suggesting why that might be rather than having a diagnosis.

I raised concerns with the surgeon and asked my GP for a cardiology referral in an attempt to hurry things along.  My surgeon opted to wait for an opinion, or rather an OK from the cardiologist, suspending me from the surgery waiting list.

Stress and anxiety now mounting because I knew the chance of landing with a cardiologist who was even familiar with dysautomnia, let alone capable of diagnosis and treatment seemed slim. And then there was the timescale that seeing an NHS cardiologist and waiting for tests and follow up would take. I could see surgery delayed until summer or later meaning I’d pain, nausea and problems for over a year.

I’m so fortunate that a family member, seeing my distress and position, offered to pay for me to pursue a diagnosis, explanation and an OK for my surgeon privately and therefore quickly. I have to say I struggled a lot with the generosity of the offer, the implications of cost and my worth to be invested in. But that’s another post.

Yesterday I saw my selected autonomic specialist in Leicester. We ended up taking about an hour and a quarter of his time, covering my ME history as well as the suspected POTS. He was interested in my home 10 minute standing tests for POTS and kept my prepared info.

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He examined me thoroughly and perfromed a 3 minute active stand test.

He suspected I do not have classic POTS but that perhaps I have some mild dysautomnia. He wasn’t unduly worried about the history and stats I was giving him. But certainly there is sinus tachycardia which would benefit from treatment. The ECG showed sinus tachycardia and a weak pulse which strengthened his view that treatment could be beneficial.

He will ask my GP to prescribe Ivabradine, his preferred option, as it slows the heart without the side effect of tiredness that beta-blockers often come with. But as a 2nd option, if the GP is reluctant to prescribe Ivabradine (which is new, off licence and expensive) then he’s prescribed a beta-blocker. He also gave me the choice of Ivabradine privately but at about £60 a month it’s a very expensive option to self fund.

He’s asking for a NHS 24 hour urine collection test to exclude rare adrenal condition via my GP. And a thyroid test would be a good idea.

Once my heart rate is slowed I’ll be back for a private EKG to exclude any underlying physical problems. Then, after a follow up, referred back to the NHS in Leicester for autonomic testing, which may take time with waiting lists. But as he is addressing my immediate concern by writing to my surgeon giving the all clear to operate with his clinical findings, time I can afford.

The best thing was having an hour to talk to the consultant without pressure. It really did take that whole hour (and a bit!) to talk about everything and even then I had to cut short some of the ME stuff and steer him more towards OI stuff. We certainly got a lot out of it, not least being the first doctor to see my tachycardia and actually do something about it, namely treatment and further testing. It felt at times that he was being dismissive of my symptoms and stats, but I think after asking him that it was that he was framing my level of dysautomnia against the spectrum. Sort of reassuring me  not to be unduly worried if you like.

He’s not dismissing POTS totally because autonomic testing will show more anyway. My baseline HR was so high to start with (being in the doctors office and a bit anxious) that he felt the test couldn’t show POTS. Like my home tests I was raising less than 30bpm but going over 120bpm, but his opinion was that wasn’t a clear indication as my starting resting HR was so elevated. His opinion was that my BP rising on standing was a normal reaction.

I feel others specialists would interpret my results differently. He is an advocate of the 3 minute stand test, feeling that if an autonomic reaction is going to happen it happens quickly and anything more is something else I suppose. I’m not a huge fan of this approach, but it’s the specialist I’ve got so I have to work with that. And the specialist I’ve got is a huge improvement on the big fat zero I had before. And I am getting treatment which would be the same for POTS anyway so the end result is much the same. Trying to be relaxed and philosophical about it because that’s the reality I have to deal with.

 

 

 

 

 

 

365 Days of Weight Loss with ME

It’s my 365th day of weight loss using MyFitnessPal.com and I’ve logged my food and exercise every day since I made the decisions to lose the weight.

I’ve lost a smidge off 2.5 stone.
I’ve lost 7″ of my waist, hips and bust.
I’ve even lost 2.75″ off my ankles and I never considered I had fat ankles before!

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I’ve kept to the plan by not denying myself anything bur rather have small moderate indulgences as treats and a day off every so often where I’ve gone over my allowance and just enjoyed it.

I’m set to sedentary on MFP because of my illness ME/CFS but I have been logging things other people would find trivial – like cooking or bleaching my hair – because for me those things take a lot of energy and are outside my normal activity levels.

When I started trying to exercise I had to push myself to do a 10 minute seated workout and managed just the warm up section of my Pilates DVD (mat work).  I used tiny hand weights and had to limit my exercise to every other day or so.  I started swimming in the summer and the first few times I managed maybe 4 lengths over 20 minutes with lots of resting inbetween.

Now I can do nearly an hour of floor based Pilates, 20 minutes of (gentle, low impact) workout DVD’s and am up to around 1.5kg weights (and increasing as I focus on some strength exercises).   I’m swimming 2-3 times a month and although I still have to rest between lengths and go gently on average I’m burning the calories MFP would expect me to for the time I’m in the pool – meaning I average out to a normal person in swimming terms 😉

Body Control Pilates, swimming and lately toning with weights has been achievable exercise which has given me results & benefits.

pilates diamond press

Pilates Diamond Press – Fantastic for My Posture

My stamina is better, my flexibility is much better, my back pain is less, I had to get smaller clothes. My posture has improved. I wouldn’t say I have more energy in a conventional sense because of how my illness robs me of energy but I do feel lighter and more able to do bouts of activity and recover reasonably quickly. When I push myself (which isn’t always a good idea with my illness) I can push myself for harder and longer before I feel I’m about to collapse.I’m about 70% to target which I hope to hit in May 2013 if I can get things back on track from my current plateau.  I’m taking delivery of a Fitbit this week and am hoping to start doing some walking to increase my cardio and see if I can build up gradually to doing more.

The Fitbit should provide some interesting information about the level of my activity during the day as it’s very sensitive.  Being so sedentary it’s sometimes difficult to know just what calorie allowance to use and I switched to Lightly Active in December as I was doing a bit more routinely but that led to my weight plateauing through January.  The Fitbit should help give me some insight into my average activity levels as well as encourage me to up my step count if possible.  Motivation to move isn’t the issue, as ever with ME/CFS it’s physical resources I lack not determination.

I have managed to increase my exercise over the year but I mainly owe my weight loss to diet and following a calorie controlled diet which is low in fat (like the Swank Low Fat Diet for MS I’ve mentioned before).

More background about how I’ve lost weight with ME/CFS:

Losing Weight with ME progress report – 6 months

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Well it’s over 6 months of healthy eating and gentle exercise and I’ve lost 27lbs. Slightly behind schedule but that’s not the end of the world.

I’m needing to mix things up a little in the coming weeks to keep on track and build on the work I’ve done.  I’m somewhat more ill with some big exertions recently like a sort of holiday and family celebrations so the exercise has dropped off and the pull of comfort eating is stronger.  Especially as the weather declines and the days grow darker the lure of comfort food is strong.  But I’ve come half way so I’m not turning back now.

Losing the weight has made life a little easier and in some ways you could say I have more energy because there’s less of me to haul around.  But it hasn’t reversed my ME. I think eating less fat has been a big boost to my system.  I looked up the Swank Low Fat Diet for MS and happily discovered that I’ve actually been eating under the recommended fat levels for months now. A lot of the measures it suggests are part of my eating habits anyway with the adjustments I make for IBS.  So in that respect I think my ME has been helped a little.

I’ve been finding it tricky to tip the scales and measuring tape beyond my current 27lb loss into the 2nd half of my target weight loss.  Hoping that mixing some things up int he coming weeks with exercise and diet might give a kickstart to that.  One thing I did discover was that as I had been doing more exercise (like walking or gentle swimming) I hadn’t been eating back my exercise calories leaving me with a low balance of fuel for the days activities.  So I’ve been eating more on those days and that has helped.

It’s certainly not easy to lose weight when your activites and diet are so restricted. Adjusting to smaller portion sizes and discovering how little fuel my body actually needs on sedentary days has been a revelation. I’ll keep chipping away and hope by Spring I’m at my target.

Losing Weight with ME progress report – 19 weeks

Here’s my progress report for my plan to lose weight with ME. I’ve been healthy eating and doing what little exercise I can with ME for 19 weeks now and I’m very happy to report I’ve lost 19lbs so far. On target with an average 1lb a week loss!  I’ve lost over 4.5″ off my waist, hips and bust. It’s not always been easy but I am very very determined this time around and using the MyFitnessPal web site has really helped.  Not only has it helped me track my food and exercise but I’ve learnt a lot about my food habits and changed them for myself instead of following a programme of rules set by someone else.

It’s a balancing act with my gut and IBS issues to also eat a calorie deficit in a healthy way.  A lot of foods usually considered to be the main core of healthy eating aggrevate my gut (wholemeal, brown rice/pasta, salad greens … roughage generally!) so I’ve had to find things that work for me and are as healthy as can be.

I’m eating a calorie deficit each week and doing a little exercise too.  Generally anything that gets my heart pumping leaves me crumpled within minutes so it’s all quite gentle stuff.

My main exercise has been pilates following Lynne Robinson’s Body Control DVD (with extra exercises from Weekly Workout DVD) Usually I skip the standing exercises and stick to floor work which means most of it is lying down with a few exercises on all fours.  I can now do about an hour including warm up/wind down and am definately feeling the benefits of stretching muscles.  It’s helped with pain and posture leaving me *almost* energised afterwards. When I haven’t done it in a week or so (I had norovirus which set me back) I can feel it in my hamstrings when I come to stretch them and my back gives me more problems.

I’ve also had the opportunity to try some gentle swimming each week. My sister-in-law has been taking my 1 year old niece for half hour swimming lessons each week so she’s taking me along. I get to use the big pool while they have the lesson. I do a gentle swishing swim on my back as my heart rate monitor shows that even side stroke is too energetic for me.  The first week I wore myself out but since I’ve adopted half floating/half swishing on my back it’s been less exhausting and more therapeutic.  What’s also good is my local council gave me a special card membership for free being disabled (usually £25) and also give me half price admission. That makes a short session with minimal swimming much more viable.

I’m also still using my  rebounder although not as much as I should be (rebounder for ME/CFS ). But I’m trying to do at least a couple of minute each day as it can’t hurt my efforts.

The other 2 DVD’s are still enjoyable though I’ve not done them so much the last month but focused more on pilates as my energy levels haven’t always been so good.  I always seem to be recovering from something or resting in preparation for something at the moment!

I’m starting to feel muscle definition in my arms and thighs. Plus I know I’ve improved the strength in my core thanks to Pilates as I can now sit up from the rest/child’s pose which I couldn’t when I started- I also noticed when I had a bath that going from lying to sitting is easier and as there’s a bit less of me I’m easier to wash.  I’m hoping as I’ve already lost 19lbs I’ll be a little easier for family to push me in my wheelchair too.

I’m 38% towards my target weight and dress size. It’s going to take me a year to get there but it’s so worth it. I feel good about myself even if the ME is kicking my butt a bit at the moment! And I’ve even inspired my husband to sign up to MFP site and see how to maximise his own healthy eating and fitness regime. He has a little less than me to lose to his target and I think he may lose it faster as he can do some proper cardio. He lost 2lbs in his first week  of sort of feeling his way and I’m so very proud of him.

Created by MyFitnessPal – Free Calorie Counter


Fundraising


Push It 11 Sep 2011

for ME Research

CFS Links & Resources

See my entire list of CFS/ME/CFIDS links to sites, articles and resources via del.io.us
http://del.icio.us/rachelcreative/M.E.
New stuff is added all the time.
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