Neuropathic pain in hands: Having run out of... - Pain Concern

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Neuropathic pain in hands

Suzyhayes profile image
16 Replies

Having run out of options to treat this condition I am interested to know if anyone has tried capsaicin (cayenne piment) which I have heard can give relief up to three months but it has to be administered in a hospital pain clinic here in France.

Since my surgery for stenosis more than three years ago I have unbearable stinging pain in my hands which I compare to like having my hands in a nest of wasps. None of the drugs or therapies have made any difference.

I would like to be prescribed sativex but at the moment it is only for MS Sufferers here in France.

I did contact the London Private clinic Dan suggested. They do prescribe sativex if they think it appropriate but I would need to come to London and a consultation costs £275. I would be willing to pay but unfortunately it is not possible for me to travel to the U.K. At the moment.

By the way what has become of Hardey Leone who entertained us before Christmas.

Also sorry you had such a hard time Paton and missed your carol service. Hope your husband is feeling better.

Bon courage to everyone.

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Suzyhayes profile image
Suzyhayes
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16 Replies
masond8051 profile image
masond8051

I tried this cream only a tiny dot on my finger and placed it under my breast where I have the nerve pain, lets say for me I was on fire simular feeling to deep heat cream but more stronger,... I had to was this tiny dot size cream off me and apply ice packs. it might work for others until you try you will never know. I could not take the pain. I dread to think what would have happened if I had applied a full dosage... goo/d luck

Jocelyne

earthwitch profile image
earthwitch

I've tried capsaicin ointments but it didn't really help me and irritated the skin, so I gave it up.

If you are looking at alternative treatments, had you considered low dose naltrexone? Same problems of trying to find someone to prescribe it, but if you check out one of the LDN websites or forums you can usually get advice, and I don't know anyone who wanted it and hasn't managed to get it prescribed. I've found LDN really helps modify my pain a lot. It doesn't get rid of it, but it kind of changes the way it impacts on you (messes with your pain sensations in some way) so it makes pain manageable. Only problem with it is that you have to be off all opiate pain meds as it is an opiate antagonist.

katieoxo60 profile image
katieoxo60

Hi Suzyhayes, I had a capsicum cream many years ago for arthritis in the hands, it was a new thing then but it does work. Only thing you have to be careful of is washing your hands thoroughly. I also tried a cream in Spain which works well but can't recall the name sadly, it was quite expensive though. Creams and patches save all the problems of drug side effects, at present I am using Aloe Vera cream which gives minor relief need to shop around for cheapest, I have arthritis in hands and feet and take painkillers also . Hope this helps, pity you can't get it more easily in France, here it can be bought from Holland & Barret or prescribe by a GP as far as I know.

painbypayne profile image
painbypayne

Hi Dan

Just been reading your reply yesterday to Suzyhayes concerning capsaicin together with your previous reference to sativex and that a london based clinic that may be able to prescribe it.

I have been a chronic pain sufferer from 2008 and my reliance and long term use of opioids has caused me some very serious irreversible health problems

and we are now running out of options to treat my condition.

I would very interested to learn if anyone non MS sufferers have been successful in obtaining or trialing sativex, suzy mentions a London Private clinic you referred to, but unfortunately I cannot find your earlier reference or the clinic contact details.

Kind regards

SAMBS profile image
SAMBS in reply to painbypayne

Hi PBP.

See my reply to,Susyhayes, just above

We seem to have a bit in common you and I. I have refused to take more medications, on the basis they wrecked my liver! I take a natural product now by Arko pharma. Called Arko Royal, recommended to me by my pharmacist here, you can buy in UK also. Look up the manufacturer online! Just coming to end of 1st month, start 2nd month treatment and start again on 3rd Jan. I feel so much better and some of my blood tests have started improving since I stopped the meds, except Levoththyroxine. My next blood test due mid Jan!

Happy Hunting and a Happy New Year!

Shirley

Suzyhayes profile image
Suzyhayes

Hi Dan, someone has suggested naltrexone for neuropathic pain. Primarily it appears to be used to ween people off alcohol. Have you heard of it being used for pain?

I've received info from Dr. jenner's clinic but it isn't really possible for me to travel to London at the moment. I'll make an appointment to go back to the pain clinic here in Avignon when the staff return from holidays. I'm going to ask again about sativex and capsaicin.

How are you? Any improvement in your condition. Are you still taking a concoction of drugs?

All the best. suzy

earthwitch profile image
earthwitch in reply to Suzyhayes

naltrexone at low doses is being increasingly used by people with autoimmune conditions (including MS) and also by people who suffer from chronic pain. This link should tell you more lowdosenaltrexone.org/

It works on pain by modifying your endorphin responses. I find it more effective than when I was on 8 x 30/500 cocodamol a day. The only difficulty is that because it is an opiate antagonist, you can't take any kind of opiate pain meds when you are on LDN. For me, it was worth the two weeks of withdrawal effects to get off the codeine and onto LDN.

We can buy this cream in the chemist if I remember correctly. One problem you can have if it i on your hands it car affect the eyes if you rub them after application. I understand there are new versions that need expert application

You could try an NSID cream for joints. If you decide to use aforementioned cream cover your hands when applied, rubber gloves etc

BOB

Lou_inpain profile image
Lou_inpain

Hi Suzy

I tried the cream and didn't like it. It didn't do that much for me. My neuropathic pain has spread to my right hand as well and as I'm right handed I can definitely emphasise with you.

I take clonazepam and venlafaxine for neuropathic pain prescribed by my pain consultant - both treat neuropathic pain off licence so not sure if usual GP can prescribe them.

Have you tried all the usual drugs such as Gabapentin, amitriptaline, Lyrica, Tegretol etc?

Keep us posted.

Lou xxx

BTW - think Hardly was a troll so probably been deleted from the site.

SAMBS profile image
SAMBS

Hi Suzy I'm in France also. My doctor has prescribed me 1st an analgesic cream called Dexeryl , just to rub in , which worked when it was bones in involved in fingers of right hand, and of neck also. However this last time he's given me a Gel called Flector diclofenac épolamine, well its what the pharmacy gave me which I need to use around my wrist, more for the tendons.

In fact I've just put some on now. It's a pressurised container is reducing the pain/ache already. It seems to be something made for pharmacists to dispense cos I can't see a big drug company name. It's made in laboratories in DEPT 06. Which is the côté d'azur i think. Unfortunately me doctor and 3 specialists are still not sure what my problem is overall, other than a very low platelet count, but my overall,several problems come under the heading of Thrombocytopenia. My muscles are wasting away, I'm almost skin and bones (some painful ones) now, down to 58 kg, when I weighed 13 stone 3 years ago, 83 kg. so that's why you'll see my name all over the place on HU. According to what I've got, so I'm trying to help others where and while I can.

Heureuse et bon sante, bon année à toi et famille

Shirley xxx

Suzyhayes profile image
Suzyhayes in reply to SAMBS

Dear Shirley, thanks for your post and recommendations. I use dexeryl cream for dry skin but it contains nothing to alleviate neuropathic pain. I'm not familiar with the other gel you mentioned but I will ask my pharmacist. Do you need an ordinance?

Sorry to hear you are suffering so much. I hope you find some treatment to help you.

Which part of France are you? We are living permanently in the Luberon which is a beautiful part of France. We are near the small town of Apt.

Bonne Année à toi et moins douleur pendant le prochain an.

SAMBS profile image
SAMBS in reply to Suzyhayes

Hi Suzy, im up In the Sarthe (dépt 72) about 30 kms NW Le Mans.

Re the Flector, it dosent need a prescription, but yes tell pharmacist you want it for neuropathic pain. I think thats why my doc or Pharma changed me from the Dexeryl, which is very good for dry skin, on the face as well :-) for me. I also have hypothyroidism which is why I use Dex.

The other cream product I've had before from Doc only on ordnance is (Locoid) which reads .....de tube contient trente ml de 17-butyrate d'hydrocortisone, made by Astellas - which may be even better better than Flector for you. Again a chat with the pharma 1st probably more helpful before asking Doc.

Oops I just realised I got the names mixed up last night, no the Dexeryl isn't an analgesic - sorry about That.

I've been given so much inappropriate stuff by my Doc, I think he just prescribes certain drugs by 'habit' because he gave it to others. He's only before Xmas realised how serious my condition is because I've just received a letter from CPAM, I'm now on 100% for everything, including transport and plasters! I can't get to him and medical centre unless I go by taxi. I just wish he'd taken notice of all the *marks on parts of my big and regular blood tests, that were out of range! I've always seen the * and commented, but didn't know what the effects of the differences would mean. I think I do now.

I think we are different ends of the country, I've heard of the Luberon, even seen Apt mentioned I think, on one of the expat forums. Is it a mountainous area. I moved up here from the Herault and certainly wish I hadn't!

SORRY TO ALL HERE, for going off topic, but do wish you all a Happy & Healthier New Year!

Byfergie profile image
Byfergie

Yes I have it helps circulation warms up hands I am on piriton and also have quinoric anti malerial GoPo vit c for it,naprosyn might also help.

My condition is fentanylinduced hyperalgesia broke neuropathic pathways sativex was refused although social services said that condition is like ms ,stroke and Parkinson's rolled Into one have bone and spinal issues as well and there is research pointing to the fact that it would help .suffer morphine itch even after withdrawing feel itch in bone nerves and skin and it it sort of hums also in brain it is like nettle rash without the rash.For me tiredness makes it worse.

I feel peeved that class a drugs can be presribed that can cause catastrophic conditions and yet the nhs and this country are so worried about sativex which might help!

As far as I know the usual restrictions still apply in uk to providing private scripts for patients who don't have ms.

Accupuncture may also help as well as lots of leafy greens .regards

bnetleyfox profile image
bnetleyfox

I have

also consulted Dr Jenner at the London Pain Clinic in Harley St. It is likely his clinic you were referred too. I am not familiar with sativex but if Dr Jenner prescribes it then I am sure it's a good drug.

Marylyn profile image
Marylyn

This is neuropathic pain caused by a severe vitamin b12 deficiency which causes demyelination nerve damage .I saw 17 Drs attended 2 brain & thyroid scans,loads of blood & urine before I received an accurate diagnosis.Unfortunately due to late treatment I have hearing loss,numb feet & hands ,permanent nerve damage & severe cervical stenosis.These are blood tests recommended folate,iron,ferritin,serum & active vitamin B12 ,MMA, homocysteine,vitamin D ,magnesium,calcuim,potassium levels.Any serum b12 level below 500 requires vit b12 injections especially if neurological symptoms present.

Suzyhayes profile image
Suzyhayes

my nerve damage was caused by botched surgery for cervical stenosis. ive had severe neuropathy pain in my hands for seven years now and have never found any treatment or medication that relieves the pain. what do you do.

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