Peripheral Neuropathy

[Mancguy]

Hi there, I am just wondering if anyone else suffers from it. I have had it for about 4yrs and have tried a few meds so far but not really had much luck. The best thing I have found so far it Pregablin. It reduces the feeling of electric shocks but causes really bd headaches. I am having a bit of a nightmare with my dr and neurologist and I'm hoping to get referred to the pain clinic. Any advice would be greatly appreciated

[Davidthomas06]

I have that now as a result of critical care in ICU. I find the more I move the better it gets, so physio/gym & swimming helps. I now have no associated pain with it.

[jackbourne]

I've had it for well over a year now. Miserable isn't it. I've tried Gabapentin, Tramadol for the pain, nothing seems to be much use to be honest. I sympathise greatly with your feeling of nightmare re Dr and neurologist, I feel very much the same and I also am awaiting referral to the pain clinic.

I appreciate that I've said absolutely nothing that advises you, i only wish I could but sometimes it's nice to at least know you're not alone. I wish you all the best and if we could keep in touch maybe if either of us get any further we can then keep each other informed.

Unlike David, your other replier, I've gone from a 3 time a week gym bod before onset to nothing now as the pain is too great whenever I put pressure on it for cardio or using free weights. I have also read that swimming is supposed to help though, so maybe I'll give that a try.

Sorry not to be more helpful

PS Just out of curiosity, did they suggest what had caused the neuropathy?

[247sweet]

Oh poor you! Nerve pain sucks. I thought I had neuropathy, but after tests it turned out to be carpal tunnel syndrome. Which I had a successful operation for. When my nerve pain was bad I found warmth helped, hot water bottle etc.

Good luck

[Ronjohn62]

I have tried a few things but now on Cymbalta (dulexitine) and it has given me the most relief for neuropathy. Also marijuana helps as well.

[Mancguy in reply to Ronjohn62]

I tried duloxetine and couldn't function on it and I've never been able to deal with dope. I did consider trying it but it's illegal and I would be too scared to now

[codyodie]

I have tried most druf therapies for neuropathy. The only thing that made a difference, aside from opiates, was marijuana. Either smoked, or edible form. Gives me alot of relief,and no opiate withdrawal which is always awful.

I started using marijuana to control migraine headaches when I was a young adult. Before using for migraines, I was totally an anti marijuana supporter. I always, until that point in lufe, thought it was a drug for "burnouts" that had no goals in life. There is a ton of information on the web about it's therapeutic uses.

I hope this helps.

[Mancguy in reply to codyodie]

Hi there, I did read up about it but I have smoked 2 joints in my life and I honestly lost all control. It's also illegal over here so would worry about getting caught (even tho all they would do would be give me a slap on the wrist)

[Jim1962 in reply to Mancguy]

Have your HIV Doctor write you a script for Marinol, man made THC, comes in a little round ball, easy on the system & no effect to the head except for your pain receptors. My suggestion is starting at 10 mg dose. You will feel better soon

[Mancguy in reply to Jim1962]

I'll ask about that but not sure if it is available in this country

[pauldecle Partner ForumLink]

Hi There,

Sorry, I just cut and pasted this in from the i-Base web site

i-base.info/guides/side/per...

What meds are you on? I had PN years ago when I was on d4T. If it helps, after years, I don't have it any more.

../

PN can be caused by HIV, especially at low CD4 counts (under 100 cells/mm3). It is also a complication of diabetes, and rates of diabetes are increasing as people living with HIV get older.

It is sometimes difficult to know the cause but if the numbness or pain is symmetrical in both hands or both feet it is more likely to be a side effect than related to HIV.

Symptoms include increased sensitivity or numbness, or tingling in your hands and/or feet. Often it is something you hardly notice, or that comes and goes.

If neuropathy gets worse it can become very painful. It is a side effect that you should take very seriously.

PN is mainly associated with nucleosides, especially the ‘d’ drugs. These are ddC (no longer manufactured), ddI, d4T and more rarely with 3TC.

Using more than one of these drugs together can increase the risk as can use of other drugs such as hydroxyurea, dapsone, thalidomide, isoniazid and vincristine.

Alcohol, smoking, amphetamines, deficiency of vitamins B12 and E and other illnesses like diabetes and syphilis can also cause and make neuropathy worse; B12 and folate levels can be tested.

Can PN be measured?

Simple tests for neuropathy include comparing ankle to knee reflexes, or using a pin to test sensations from the toes up the leg. A tuning fork will show a reduced vibration in a foot with neuropathy.

Recent studies have measured nerve damage in skin in a biopsy sample.

Your doctor may just rely on what you report is happening. If your symptoms are causing you discomfort or pain, you must make sure it is taken seriously.

Sometimes doctors underestimate how much pain people experience because they think that their patients always exaggerate pain. In fact, most people underestimate pain when talking to their doctor.

Sensitivity tests that measure your reactions to different pressure are not used so frequently, and it can sometimes take 4-6 weeks to get the results. Getting these results recorded regularly though can help you measure any worsening of the symptoms.

Is neuropathy reversible?

The earlier you switch treatment, and the less severe the side effects when you switch, the more likely that the symptoms will reverse, but this does not happen for everyone.

Moderate and severe neuropathy very rarely resolves fully but switching drugs can stop the symptoms getting worse. If you have other drugs to use, switching at the first sign of symptoms may be the best thing you can do. Neuropathy can be irreversible and debilitating.

d4T is rarely used in Western countries because of this and other side effects. If d4T is the cause of your neuropathy and you cannot change treatment you can reduce dose. The original twice-daily 40mg dose can be reduced to 30mg or even 20mg twice daily.

After switching, you may have to wait up to two months to know how much this has helped. Often symptoms can continue to get worse before you notice an improvement.

Treatments for neuropathy

There are currently no approved treatments to repair or regrow damaged nerves.

One study has shown that acetyl-L-carnitine (Alcar) at a dose of 1500mg, twice daily, can lead to nerve improvement. Acetyl-L-carnitine can be prescribed on a named-patient basis. Very few clinics in the UK use this treatment routinely.

Research into a synthetic human Nerve Growth Factor (hNGF) in the US which looked promising was then stopped.

Painkillers

Treatments prescribed to manage neuropathy are basically used to mask the pain. Sometimes these painkillers can have side effects themselves which make them difficult to use.

Amitriptyline, nortriptyline (tricyclic antidepressants) and gabapentin and pregabalin (antiepileptic drugs) are used to treatment neuropathic pain. They do not reduce the pain, but change how your brain perceives it. Even when they help they can be difficult to tolerate because of they also cause drowsiness.

Opiate-based painkillers such as codeine, dihydrocodeine, fentanyl, methadone, morphine and tramadol sometimes help when the pain is severe.

Although not always appropriate for neurological damage, they sometimes help. It can take several days to find the appropriate dose, and these drugs can interact with some HIV drugs. A side effect of opiates is constipation.

Cannabis (marijuana), or synthetic versions such as nabilone (Cesamet) have been used to reduce pain related to neuropathy. They can be prescribed in the UK. Dronabinol (Marinol) is only approved in the US.

Capsaicin patches that contain chilli pepper are available in the UK.

You should also have appropriate care from a pain control nurse specialist, rather than your HIV doctor. They will be able to make a full assessment of your level of pain, and adequately prescribe medication to reduce it.

More rarely, when pain is so great that it is not treatable, alcohol can be injected into a nerve junction. Nerve blocks can be very effective when they work, and are a specialist procedure, but can also cause loss of sensation and sometimes produce unpredictable results.

Other treatment approaches are listed on the next page, though there is limited research to support some of these.

Alternative treatments

Alternative treatments often produce a more acceptable, and more effective, way of managing neuropathy.

Although not always proven in studies, there is anecdotal reports on these approaches. With a condition that is painful, it is worth trying each of these in case they help (though not all at the same time).

Acetyl-L-carnitine (Alcar) is a supplement that has been effective in small studies and anecdotally. Other studies did not find a benefit.

Acupuncture is annecdotally reported to improve quality of life but not supported by research. A study comparing acupuncture to placebo showed no benefit, but the acupuncture was a standardised rather than individualised treatment. This is one you need to decide for yourself.

Magnets – Using magnetic insoles have reported benefits in diabetic-related neuropathy, although a published study found little difference compared to placebo (sham) insoles.

Local anaesthetic creams such as Lidocaine (5%), and Lidocaine patches reported benefits in recent studies.

Capsaicin – Patches made from chilli peppers that causes increased local blood flow when applied to the skin. Although approved in Europe the FDA in the US did not approve the Qutenza patch for HIV neuropathy. This was because the studies did not show a clear benefit.

Voltarol (NSAID) – a nonsteroidal anti-inflammatory drug.

Alpha-Lipoic Acid – 600 to 900mg daily may help protect nerves from inflammation.

Cod liver oil – One or two tablespoons a day has anecdotally produced beneficial reports, especially if the symptoms have not become very severe. This is not as bad as it sounds as modern oils are palatable and also come in flavours.

Topical aspirin – suggested in one recent study that aspirin, crushed and dissolved in water or gel and applied to the painful area can relieve symptoms.

Vitamin B6 (pyridoxine) – requires caution with dosing as B6 can also worsen neuropathy (100mg daily is sometimes recommended).

Vitamin B12 – available as injections, lozenges, or nose-gel. B12 levels should be checked by your doctor. Dosage varies but if levels are too high this can worsen neuropathy.

Magnesium – 250mg – 2 capsules each morning.

Calcium – 300mg – 2 capsules each evening.

Other suggestions

Avoid tight fitting shoes and socks which restrict blood circulation.

Keep your feet uncovered at night – keeping them cooler and out of contact with sheets or bedding.

Try deep tissue massage.

Don’t walk or stand for long periods.

Soak your feet in cool water.

Further reading

Useful recommended reference books written in non-technical language are Numb Toes and Aching Soles (July 1999) and Numb Toes and Other Woes (July 2001) both by John A. Senneff. ISBN: 0967110718 and 0967110734.

Lark Lands has led community-based research in the use of nutrients, diet and supplements for PN. This comprehensive overview is recommended:

Lark Lands’ nutrient therapy for neuropathy PDF

Lark Lands’ treatment factsheets

Neuropathy Trust (UK) offer information and support:

Neuropathy Trust

Neuropathy Association (US):

Neuropathy Association

Neuropathy can be very painful and debilitating… ask for a referral to a pain management clinic.

/..

If you go to the i-Base web site i-base.info/guides/side/per...

all the links will work. FI you use the search function on their site they have a load of more technical information.

PS.

If you are not happy with your HIV Doctor let me know, I can see if there is a better one for you to see about this (I am guessing your in Manchester) if you want to email me directly you can use [e-mail]

All the best,

Paul

[Andylove258]

hi i have tha same problem ive had 13 ops on my left arm and hand and 5 on my right didnt work unfortunatley but im now going through the process of getting a spinal chord stimulater that would hopefully stop the pain i get my surgeon said it would be a good idea to have it and the pain clinic agreed its a long process though! i had amitriptaline the gabapentin then pregabalin didnt help but fingers crossed google spinal chord stimulater theres lots of information its not a guaranteed cure but it could help! Andy

[Ydontujustdie]

I have taken Ddi D4t 3tc Nelfinavir and old style ritonavir which was in a huge dose and it was only when my hair fell out that a therapeutic blood level test revealed that I had 60 times the expected levels. I also took part in trials for drugs that were never used and the trial was stopped because of toxicity. Something fried my nerves and my neurologist told me that all he could do was monitor the condition but could offer no treatment. I tried cannabis legally from a clinic in London which had been given a licence by Camden council. It only worked sometimes. Often it made me focus on the pain and the death of my friends and just made me extremely frightened.

I cannot tolerate the painkillers that I have tried. They make my dry mouth worse and add to the fatigue I experience. I don't have pins and needles or a feeling of being crushed. My lower legs feel like they are on fire. The only way I could deal with this was to study the history of pain and the suffering that was documented when inflicted by the church. If your legs were put in a fire you would probably panic and scream. But if after a few hours you realised that the flesh was undamaged, the screaming has tired you out and you actually fancy a cup of tea. I learned to consider the pain as useless information and combine imaging techniques, self hypnosis and other tricks to allow me to function. I have to keep my eye on the ball. If I start squirming and writhing I have lost the battle and have to suffer until I take control. I broke my ankle last year and the donut shaped area of throbbing was like a period of respite. The problem was that I got a serious case of cellulitis that was resistant to antibiotics. I think I upset my neighbours with my yelling and swearing all night. There were moments when I would have thrown myself out of the window but I can't do that while my mother is alive. Anyway the craters in my skin have healed and I'm back to something I can tolerate.

I do not want to use morphine in case I need it as I approach my clinical endpoint. I had a friend who was a long term heroin addict and took an overdose rather than experience the liver cancer she had.

I also have liver problems. It was hard to convince my doctor that I was never a user of alcohol. A biopsy and low platelet count does suggest I am a lush but I have had HIV for longer than they have been alive and don't understand that I'm used to having input concerning my treatment. Anyway I can't risk taking painkillers as the impact on my liver may do more harm.

I am proud of myself for adhering to a 24/7 schedule of pills by the handful. Having explosive diarrhoea and projectile vomiting that left my bum feeling like a dragons nostril and guts that were acidic enough to dissolve teeth. Many people just couldn't keep going and are no longer here. But what really boils my piss is that after all that some nasty bitch at the DWP has decided that I don't have any nerve damage and I just get tired sometimes so my lifetime DLA award was cancelled. My car was taken and I now get to subsist on £40 pw. The appeal process is not practical if you are seriously ill and having a nervous breakdown ended my chance of getting to a tribunal.

I have been expecting to be dead fairly soon since I was 21 and now I'm 56. I just never thought my cause of death would be strangled by government red tape. This has given me more pain than any wound or swollen organ. It's not as bad as losing a partner though so the subject of talking about pain crosses from the flesh to the mind. We don't have the vocabulary to express our perception of pain. To give it a score from 1 to 10 is a joke. Find someone who says they experience a 10 and then pull their fingernails out.

Nearly everyone hurts. Migraines, haemorrhoids, ingrown toenails. Colitis the list is endless. Most suffer in private. It's part of being human

[George147]

The pain clinic I went to was useless for me, didn’t offer me any advice as to how to control the pain at all, no new tablets or anything , in the end I got some voltarol gel seems to be as good as anything but just get in with it is the best policy