Has anyone ideas on how I can cope with chro... - Pain Concern

Pain Concern

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Has anyone ideas on how I can cope with chronic pain

Camellion
Camellion

Im new here. Liz Im 69 female suffering with body nerve pains including my private parts, which is unbearable. Pains increased last twelve months. Gp said can do no more. On gabapentine but no real affect. Used to be able to sleep but pains so bad its not possible to sleep. Im at my wits end. I was a very possotive strong person but no longer. My whole life has been taken from, realy dont know I get through each day. It seems to be an impossible situation. All I feel is fear for the future. Sorry drawn out story.

29 Replies

Hello Liz , your just a little older than me and I’m so sorry for you. If it’s any consolation I’m suffering too in a different sort of way . You could be referred to “ the pain clinic” for your doctor to say he can’t do any more for you does sound very mean of him. . You need to go on some relaxation programme that might calm you. There are other avenues to go down . I’m at a bit of a crossroads like you and debating which path I should try next. Just remember we are all in the same boat, more or less .

My hot water bottle is my best friend!!!!

Camellion
Camellion in reply to rabbits65

Have tried everything but gratefull for the advice

So sorry to hear this Liz 😢

Are you on maximum dose of Gabapentin?

Have you tried any other medication?

Would a tens machine work?

Has the origin of the pain ever been investigated eg Diabetes?

Lila

Camellion
Camellion in reply to greekqueen

Tried tense but condition so severe it didn't help But thank u anyway x

greekqueen
greekqueen in reply to Camellion

That's a shame Did you get up to maximum dose of Gabapentin?Try anything else?

Hi Liz. You mention your private parts. Have you been seen by gynae. Have you heard of vulvodynia?Not sure where you are based but also for nerve pain UCLH have a pain management clinic in London. Have they suggested nerve blocks injections. Have you tried anything to help to sleep? Tens machine is a must. Electric blanket or hot water bottle too. And have you tried an osteopath with acupuncture? And cold compress wrappes in a flannel for your vulva pain.

Aoibheann
Aoibheann in reply to Jen82

Hello Jen82, can I ask you would a Tens Machine help me sleep. I suffer from terrible insomnia. Have a happy and Peaceful Easter. 🌻

Jen82
Jen82 in reply to Aoibheann

Tens machine provide an electric current to ease the pain so you could use it when lying down but I wouldn't have it on all night. It should help ease the pain to help you sleep. Definitely try an electric blanket for bed. That helps me to sleep and even get up in the morning by easing the tension in my body from the pain.

Hello Liz, have you tried CBD gummies? I wish you a Happy ☺and Peaceful Easter. 🌟 🌻

Camellion
Camellion in reply to Aoibheann

Sorry I cant reply to u all extremely bad day. I have exhausted every therapy.of which I paid for out of my retirement fund. Had mri scan for sciatica just over year ago of which I paid for as gps refused me three times. Two injections of which didn't help, I tried to explain to Nuerologist at the time that I had other symptoms, he said im possibly over sensative. Didnt matter how many times I've tried to explain to medical proffesion symptoms getting worse it was ignored and now I'm paying the price. I was informed recently that I have six degenerative discs in my spin and neck. And nerve cord also damaged. I Flaged my concerns up three years ago only to fobed of. Gps got fed up with me they passed me over to pain clinic of which I'm waiting to hear. Problem is the nerve pains- Sever stinging around vaginal area, anuse and rest of my body has been chronic for last few months, my nerves system has affected everything . Can only stand four couple minutes at a time. Wish there was also a forum for unusual conditions. Sorry for appearing to be a Moaninng Minny and lengthy reply. Thank you all for replies . I live on my own so hope u keep in touch Bless you all.

Aoibheann
Aoibheann in reply to Camellion

Dearest Liz, I feel your pain. Things can only get better so perservere. God bless and Happy Easter. 🐣 🐤🐥 XX

Sorohan
Sorohan in reply to Camellion

Sorry you are in so much pain .I myself are going to try CBS’s oil drops

As my g/p has reduced my opaids medication

without consulting me

Good luck

Nanny23
Nanny23 in reply to Camellion

Vulvodynia can cause extramarital pain in privates. I had it years ago and was treated with steroids cram soaks it took months of treatment to go away. Hope you feel better soon.

Nanny23
Nanny23 in reply to Nanny23

Not extra marital I was typing extreme pain. Correct typo. Sorry

Hi sorry to intrude on someone else’s post but just wondering if you have tried the gummies as I have been thinking about trying them for my chronic pain

Hello, not the gummies but the CBD drops. My friend gets enormous relief from the drops and she also finds they help her sleep. Take care.

I there , sorry you are in pain have you tried pregablin for the nerve pain I use and got more relief than gabapentine for mine do you also know what is causing the pain . Clive 🙏

What strength pregabalin are you taking?

I'm on 300 mg twice a day

Hi Liz I couldn’t believe what I was reading re you’re Vulva neuropathy. I have had this affliction for 8 years now which I got post chemotherapy for Leukemia. It took a long time for the docs to figure out how to treat me as it’s a virtual unknown to get side effects in this area!! I was eventually referred on to a pain clinic at the women’s hospital. Who were absolutely marvellous. I had Norspan opioid patches 10-20 mgms.and nortriptyline which is an old antidepressant but useful for nerve pain well it’s helped me. I have few months pain free now but it does break through again like now!! I presume it’s a burning pain? Mine is. Like a very bad cystitis? Very very bad.I also get some neuropathy in my feet. But it doesn’t burn sort of numb feeling

All the other drugs you mentioned didn’t help me. Cold and heat packed don’t help me either!

Please get a referral to a good pain clinic in a women’s hospital if possible or any you can

Liz I hope this has helped, I too have suffered what you are going through. This cursed affliction never goes away completely but you can get relief.

I hope you can too

Sheila in Oz

Liz , do you know what is causing you to have nerve pain. Clive X 🤗

Do they know why you developed this pain issue? Below is a link that might be helpful.

vulvalpainsociety.org/vps/i...

Hi liz. Are there any other external factors that could be associated with the pattern of your pain. Sometimes stresses can accelerate degeneration, or cause other bodily systems to impact on existing conditions (digestion, respiration etc suffer from stressors and weaken the body). It can be a vicious cycle once the anguish of pain loops in with the pain itself. I had similar sounding testicular pain some years ago which despite my extreme trepidation benefitted massively from some mild yoga exercises. I'm not suggesting you're solution would be so simple but the source of the problem can often be far from the symptom

Hi Liz , I am 99per cent that your nerve pain sciatica is coming from your neck if you have degenerative disc and cord damage will cause all kind of issues not just nerve pain I have been there and your private parts will.be from their again I have the same , do you have water works problems that can also come from your neck believe it or not . If I was you I would ask to see another neurologist . What you are describing is very similar to what I went through and cord damage can cause what I and few others on here have is called cervical myelopathy and even after surgery you still can be left with the symptoms like I have .Clive x 🤗

As Labrat says, "the source of the problem can often be far from the symptom". For some people the source of chronic and agonising pain like this, accompanied by other 'odd' symptoms, can be from a forgotten course of Ciprofloxacin or other fluoroquinolone antibiotic taken maybe a year before the pain even started. It might be worth checking back to see what medication you took in the year before the pain started to see if anything looks like the culprit. These antibiotics are often given for testicle pain (Labrat) or along with chemotherapy drugs (Elliot43 ) In fact, fluoroquinolones were originally used as chemo drugs!

Bear in mind that, while gabapentin and pregabalin help with the pain initially, you may find you need ever increasing doses as your body gets used to them and they are both famously very difficult to stop using (they need a very slow taper over months if not years).

In general, taking magnesium supplements can often help with chronic pain - most of us are mag deficient and our bodies need it for over 500 processes. You can get tablets, liquid and also powder (Epsom salts) which you can add to a bath. They help soak away pain as the mag gets directly into your tissues. CBD oil, or someone suggested gummies, can also be helpful but it can take a few days or weeks to feel an effect. Always start any new supplement (including the salts in a bath) at a very low dose and watch for signs of adverse reaction. If all's well, gradually increase the dose at your own pace. I hope you find relief soon.

Hi Liz, I'm new here also and my heart goes out to you. I assume you have been referred to a consultant/s? I got the bad news from my consultant several years ago by mail "sorry we're putting you on the scrap heap". The only advice I can give you is don't do anything silly I did on a couple of occasions till it was explained to me the pain I would put my family through. hang in there.

Hi Liz , I would advise that perhaps you try another GP at your surgery, & see if you get more satisfaction; I would write down exactly what your symptoms are, & how they are effecting you; so you have notes to refer to , if you’re finding it hard to describe symptoms, the Dr should see how concerned you are , just by the fact you’ve written it down . Make a point of saying you would like further investigations into the problem discs in your neck, & are not happy with what you have discussed with Drs in the past . If you have to spell it out to the Dr , also explain the great toll your condition is taking on your mental health. It may be a sensible idea to book a double appointment, because you are going to have a lot to say, & 10 minutes soon goes .Say you would also like your medication reviewed because it’s not helping, & if the Drs not very forthcoming , say which of the specialist consultants you would like to see , because you have no quality of life . The Dr should say who he thinks it would be best of the specialist to see , but they don’t always.

If you find a more understanding Dr , try & see them at follow up Appointments continuity & consistency are very important when you’ve got on going medical problems. Hope there may be something of help here , just to wish you good luck . Don’t give up hope.

Hi Liz.Although I am a male, i too have struggled with private part pain for a couple years. The burning uncomfortable pain. What has been 100% effective as a pain reliever has been Hydrocodone 10/325. Now, you may have to get it from a pain clinic if your gp wont prescribe it.

My gp will prescribe 3 a day for groin and thoracic spine pain. That is his limit as its too risky for his practice to prescribe more. Doctors are under quite a bit of scrutiny over prescribing opiodes. Many now wont do it.

But, if you can get the hydrocodone 10/325 I sure recommend it. It hardly touches back nerve pain but is absolutely excellent for groin pain.

Hello Liz, well how was your day? Take care ❤

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