Pain in ME–what helps you and what can I do?

Thank you everyone for the for the replies. I am really grateful. @voner would it be possible for you to explain more about what you mean about different types of textures of pain? And to give some examples? This is always a problem I've had in general with describing my symptoms, I find it very difficult to describe the severity of it.

I've asked my mom to buy me a phone holder like has been posted win the pictures above. And a stylus.

I agree with what you say about the pain clinic. I've had a lot of trouble in general with my GP practice and with my local hospital. It's actually a six month waiting list i've already been waiting two months! My mom said to them well if she's in such severe pain how do you expect someone to wait for six months and they just said well that's how it is.

The other local NHS hospitals or too far away for me to get to and I suspect the waiting list might be similar. I think I may have to go to a private hospital locally to get some help more urgently. Although that will also be father for me to travel which will be difficult but I think I have to now.

My GP also has it not been out to see me in a home visit. I'm going to make a telephone appointment with them tomorrow to ask if they may give me patches which I can apply on the skin. I cannot take codeine due to its affects on my stomach and that's all they've given me. Also higher strength opioids like tramadol also make me unwell in the past. But I do need something to help with acute pain as I am really really struggling
 
@lunarainbows,

I still struggle with accurately describing the seperate pain symptoms, but here is one example. I was never able to identify allodynia pain until I learned the medical term, allodynia! technically, mine is mechanical allodynia. Anyway, pain experienced from something touching my skin is very different feeling than a body wide flu-like ache that I also experience, so I separate them out in my communication with medical professionals.

I thought your posts described some of your symptoms quite well. your description about small movements with your hands being quite painful made me set up and take notice. That’s very familiar to me and don’t think I’ve ever mentioned it that way to any kind of medical professional, but I should. The better you can detail what you are feeling, hopefully the better the communication to a medical professional will be. It certainly is better than, "it hurts! please make it better", which is what we are feeling emotionally.

I struggle with expressing the severity of the pain also. It’s extremely difficult without inserting emotion. I started having better luck when I started describing to them the activities of daily living that I could not do such as: hand write, type, use a computer mouse, cut food, stir food, wear any type of coat or shirt with long sleeves, etc.. You might consider just also telling them that you struggle with expressing the extreme severity of the pain.

Here in the USA, lidocaine patches have become available over the counter without a prescription. They’re slightly less potent (4% versus 5% lidocaine) than the prescription variety, but they’re much less expensive and easier to obtain. They sometimes tamp down the pain a bit for me.

FYI, I found that a rubber tipped stylus for a phone or iPad was excruciatingly painful as it was drug across the screen, but a metal mesh one slides much easier and extends the amount of time I can use a touch screen device. Weird, but I am thankful I found something that helped. If I am just tapping a phone, a soft rubber tipped one is okay, also.

since you’re mentioning the NHS system, I’m assuming you’re in the UK? perhaps somebody from the UK can pipe in and make suggestions on how to approach trying to get a appointment sooner at a pain clinic. I suspect your GP has some influence? There must be ways to work the system?? Maybe you can start a new thread on that topic?
 
I find amitriptyline reduces my pain a lot - I just take a low dose - 10mg in the evenings. It also helps my sleep. I do still get pains if I overdo things or over-use my muscles (over-use for me, which is not much activity!), but it's not as bad as it was without that amitriptyline.

The one thing I found was that amitriptyline made my orthostatic intolerance worse because it increases heart rate, so I have to take pills to lower my heart rate at the same time, otherwise my brain fog becomes scary bad. But the combination of the two meds is working quite well for me because treating the orthostatic issues is reducing my PEM, which is also reducing my pain.

I have found that if I overdo things I can get muscle pains and weakness that last for weeks or months, but with rest the pains do eventually go. Last spring I could barely hold my phone after writing a lot of handwritten notes all semester. I didn't do any handwriting over the summer, and the pain went away and strength returned by the time the autumn came around again. Perhaps if you are able to find a way to rest you arms and hands for a period e.g. by using voice navigation/speech-to text or something, the pains might improve over time?
 
@voner thank you much for your reply. I'm glad that I've been describing my types of pain well. It's very frustrating because whenever I speak to the phone on to my GP about it, and even when I tell them I have now become unable to feed myself because of the pain, I hardly get a reaction!

But your advice is very good. I do have different types of pain Too.

Regarding the pain clinic, yes I am in the UK. my mom spoke to the first GP when he made the referral, and he said he would try to make it an urgent one and that's all he would do even if it took sometime. Then when we found out it would take so long, my mom called up the pain clinic it self and they said there's no such thing as urgent referrals so we have to wait. Then I spoke to a second GP and she just said well that's how long they take. Unfortunately this is not really something I'm surprised about that's I've had similar experiences under the NHS system related to other issues, not always about waiting times, but other things. I've spoken To others in my family and I think we are in agreement that it's we will have to go private to see someone quickly.

The lidocaine patches yes we found out about that recently and my boyfriend is going to get some for me from America. It looks like it will be cheaper to get them shipped from America than getting them privately here!


@MerryB
Thank you. It sounds like amitriptyline helps a lot of people. I have tried it in the past a few years ago but unfortunately felt very unwell on it - made my face numb twitchy. I may try it once again though. Yes I think I didn't mention it in my opening post before, also have amended now, but I wrote it in a post for the town further down- for the past fewmonths my mom has been typing for me while I dictate, or else I've been using dictation software which is what I've been doing oh my past few posts which is why there are weird spelling mistakes everywhere! Unfortunately the pain still hasn't gone away. I am very hopeful that it will though and I can get back to doing the small things are used to.

The ideas on this thread have helped me a lot and I am very hopeful.
 
lunarainbows said:
@voner thank you much for your reply. I'm glad that I've been describing my types of pain well. It's very frustrating because whenever I speak to the phone on to my GP about it, and even when I tell them I have now become unable to feed myself because of the pain, I hardly get a reaction!

But your advice is very good. I do have different types of pain Too.

Regarding the pain clinic, yes I am in the UK. my mom spoke to the first GP when he made the referral, and he said he would try to make it an urgent one and that's all he would do even if it took sometime. Then when we found out it would take so long, my mom called up the pain clinic it self and they said there's no such thing as urgent referrals so we have to wait. Then I spoke to a second GP and she just said well that's how long they take. Unfortunately this is not really something I'm surprised about that's I've had similar experiences under the NHS system related to other issues, not always about waiting times, but other things. I've spoken To others in my family and I think we are in agreement that it's we will have to go private to see someone quickly.

The lidocaine patches yes we found out about that recently and my boyfriend is going to get some for me from America. It looks like it will be cheaper to get them shipped from America than getting them privately here!


@MerryB
Thank you. It sounds like amitriptyline helps a lot of people. I have tried it in the past a few years ago but unfortunately felt very unwell on it - made my face numb twitchy. I may try it once again though. Yes I think I didn't mention it in my opening post before, also have amended now, but I wrote it in a post for the town further down- for the past fewmonths my mom has been typing for me while I dictate, or else I've been using dictation software which is what I've been doing oh my past few posts which is why there are weird spelling mistakes everywhere! Unfortunately the pain still hasn't gone away. I am very hopeful that it will though and I can get back to doing the small things are used to.

The ideas on this thread have helped me a lot and I am very hopeful.
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If you are itchy due to estrogen issues you may need to titrate any seratonin modifying drug carefully.
 
Amw66 said:
If you are itchy due to estrogen issues you may need to titrate any seratonin modifying drug carefully.
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As I understand it, you can get drops that go very low (like 1mg upwards) so you can titrate more easily.

Also, the timing of it is very important. You may need to experiment with when you take it to see when you can get the maximum pain relief/sleepiness at the right time, without being groggy for more than 30 minutes or so in the morning.

I used to take it at 8.30pm, but now I take it at 9.30pm and wake up clear-headed at 7am. Any earlier and I don't sleep as deeply which affects pain and fatigue through the day.
 
adambeyoncelowe said:
As I understand it, you can get drops that go very low (like 1mg upwards) so you can titrate more easily.

Also, the timing of it is very important. You may need to experiment with when you take it to see when you can get the maximum pain relief/sleepiness at the right time, without being groggy for more than 30 minutes or so in the morning.

I used to take it at 8.30pm, but now I take it at 9.30pm and wake up clear-headed at 7am. Any earlier and I don't sleep as deeply which affects pain and fatigue through the day.
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Yes you get drops, which also avoids filler/ capsule issues. However if female, you may also have titrate differently to adjust for monthly cycle. If itchy at mid and end cycle it could be ( if pre menipausal) that the estrogen: progesterone ratio is out of whack and this can impact seratonin signalling.
 
lunarainbows said:
@MerryB sorry I didn't take the right person for the second point in my post above! I have amended the post with your name but don't know if you would get a notification.
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No problem!

If it helps at all, I also got a lot of numbness, tingling and burning sensations when I first started taking amitriptyline, which lasted about a month. They were very strange, I even though I might have multiple sclerosis!

I spoke to the doc and pharmacist about it, and they suggested I stop taking the pills for 10 days and then start again. I did this and the numbness/tingling/burning went away - haven't had it since. They said that sometimes you have to do that to get your body used to the pills because they affect neurotransmitters it can take the body a bit of time to get used to.

It was a bit difficult coming off it for 10 days because I didn't sleep well during this time so my fatigue was very bad. But once I started taking it again the symptoms settled down and it has been helping a lot.

I am glad you have help with typing, and voice software to use. I hope you find something that helps the pain to improve.
 
When I started reading your initial post, I thought "This sounds very much like RSI (repetitive strain injury)." I used to suffer really badly with that - it got triggered initially by my sitting with my elbow in a draught in a theatre, of all things! - and it took me a long time to work out how to cope with it. Deliberately relaxing the tension in my hands, shoulders and arms was a start, as was swapping the mouse to my other hand, using keyboard shortcuts rather than mousing, and a lighter touch on the mouse/keyboard. None of which will probably do you much good, I suspect, since it seems to be phone use which causes it. One thing I did find very helpful, though, was putting the hand/arm in water as hot as I could comfortably bear (usually in washing-up gloves - I did a LOT of washing-up!). I am wondering whether a different type of device would help, though - our bodies really aren't made for sitting trying to hold a 3-inch wide device between our hands and trying to type on it with our thumbs (or forefinger in my case)!

Oh, and I did find a tubigrip round my wrist/elbow helped, although it could be a bit itchy ...
 
LDN (low-dosage naltrexone) worked very well for my neuropathic muscle aches (which went away eventually). Acupuncture also worked for that, but I only tried it once (LDN was cheaper and more convenient).
 
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Hi everyone. I'm generally taking a break from the forum, but just wanted to come back to update people as I’ve had my pain appointment.

Before my appointment, I tried gabapentin (very bad side effects) and codeine (side effects and didn't work). I started nortriptyline and workEd my way up to 10 mg, although I do not think it has helped with the pain. I've also tried other medications before, which I mentioned in my first post (tramadol, Amitriptyline). I cannot take ibuprofen due to stomach issues

Anyway I saw this dr privately. As my NHS appointment it's still over two months away. It took a lot out of me.

He didn't examine me except for my arms, which I asked him to. He said he wouldn't need to do any other investigations as my pain is coming from fibromyalgia And CFS.

And he first said to me, “there’s not much I can do”. He said injections won't work. He said he doesn't have any fibromyalgia patients who have come back and said their pain is gone and he wants to be realistic. He said my pain is so much more than just being treated with medication, and that he doesn’t like to “medicalise” my condition. Is this normal? I felt uneasy.

But then He did tell my GP to prescribe tapentadol to try though, but said only to take it if it helped by 40% or more, but so far the low dose is not doing anything.

is this how pain specialists usually are? the whole “I don't want to medicalise your condition“ thing and saying that not much will help? I do loads of meditation and it hasn't cured me. Why doesn’t he want to medicalise it?

Has anyone been helped by injections or had anything else that's helped them? I thought trigger point injections and Botox injections are often used In fibromyalgia. But this pain specialist said it wouldn't help.

I am interested in lidocaine infusions but have to wait for my NHS appointment because I can't afford privately. I'm not sure If the nhs will give them to me.
 
@voner I took I typed up sheet of paper with lots of notes on it all about my pain and as you said, described the different types of it. But honestly the pain specialist never mentioned anything that I wrote. I tried to be assertive as possible, and I had two people with me, but I just came away from it feeling sad. (I wrote a post above about an update).
 
lunarainbows said:
Hi everyone. I'm generally taking a break from the forum, but just wanted to come back to update people as I’ve had my pain appointment.

Before my appointment, I tried gabapentin (very bad side effects) and codeine (side effects and didn't work). I started nortriptyline and workEd my way up to 10 mg, although I do not think it has helped with the pain. I've also tried other medications before, which I mentioned in my first post (tramadol, Amitriptyline). I cannot take ibuprofen due to stomach issues

Anyway I saw this dr privately. As my NHS appointment it's still over two months away. It took a lot out of me.

He didn't examine me except for my arms, which I asked him to. He said he wouldn't need to do any other investigations as my pain is coming from fibromyalgia And CFS.

And he first said to me, “there’s not much I can do”. He said injections won't work. He said he doesn't have any fibromyalgia patients who have come back and said their pain is gone and he wants to be realistic. He said my pain is so much more than just being treated with medication, and that he doesn’t like to “medicalise” my condition. Is this normal? I felt uneasy.

But then He did tell my GP to prescribe tapentadol to try though, but said only to take it if it helped by 40% or more, but so far the low dose is not doing anything.

is this how pain specialists usually are? the whole “I don't want to medicalise your condition“ thing and saying that not much will help? I do loads of meditation and it hasn't cured me. Why doesn’t he want to medicalise it?

Has anyone been helped by injections or had anything else that's helped them? I thought trigger point injections and Botox injections are often used In fibromyalgia. But this pain specialist said it wouldn't help.

I am interested in lidocaine infusions but have to wait for my NHS appointment because I can't afford privately. I'm not sure If the nhs will give them to me.
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I'm sorry that this appointment was so disappointing.

"I don't want to medicalise it" is a weird thing to say. To my mind, it seems to imply that he doesn't think that it is a proper medical condition. But idk, that might not be what it means.
 
Sarah94 said:
I'm sorry that this appointment was so disappointing.

"I don't want to medicalise it" is a weird thing to say. To my mind, it seems to imply that he doesn't think that it is a proper medical condition. But idk, that might not be what it means.
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That’s what I thought it meant too. He said it a few times during the appointment. Putting all his comments together, I feel he subscribes to the PACE model of ME and also thinks the same of fibromyalgia.
 
@Sarah94
I typed into Google - my doctor says he doesn’t like to medicalise my illness.
And it came up with articles like:

https://www.theguardian.com/comment...calisation-nhs-patients-acting-like-customers

“
The over-medicalisation of illness in the NHS is down to patients acting like customers
Deborah Orr

As my mother’s case showed, patients don’t want to be told that a bit of exercise or eating better are the best cures – they want a pill or a test or an operation, and it can be difficult for doctors to persuade them otherwise”



....So I think I may find a new pain doctor when I’m well enough. It took a lot of effort and health for me to even be able to see him, which is what makes me sad! It’s why I try to go and see doctors only on recommendations from others, or referrals from my cardiologist, as he doesn’t subscribe to the PACE model of ME. But I had just chosen a pain doctor this time (at the closest hospital). And I shouldn’t have done :(
 
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lunarainbows said:
@Sarah94
I typed into Google - my doctor says he doesn’t like to medicalise my illness.
And it came up with articles like:

https://www.theguardian.com/comment...calisation-nhs-patients-acting-like-customers

“
The over-medicalisation of illness in the NHS is down to patients acting like customers
Deborah Orr

As my mother’s case showed, patients don’t want to be told that a bit of exercise or eating better are the best cures – they want a pill or a test or an operation, and it can be difficult for doctors to persuade them otherwise”



....So I think I may find a new pain doctor when I’m well enough. It took a lot of effort and health for me to even be able to see him, which is what makes me sad! It’s why I try to go and see doctors only on recommendations from others, or referrals from my cardiologist, as he doesn’t subscribe to the PACE model of ME. But I had just chosen a pain doctor this time (at the closest hospital). And I shouldn’t have done :(
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Being generous, he might just want to avoid you taking opiates long-term. Being realistic, I think he was saying it's not a medical condition. I personally wouldn't want to see a specialist who thinks there's no point treating the illness he specialises in... It makes me wonder what he actually does.

Sadly, I think pain specialists are all going to think similarly. Mostly they're in that 'catastrophising and not enough exercise' camp.

You've already tried some pain relief, presumably through your GP? A GP is likely to just work their way up the analgesic ladder, trying the least powerful drugs before going onto the next, and that might actually be a better option for you than someone who is just going to dismiss you.

There are other options besides amitriptyline and gabapentin, anyway: pregabalin, duloxetine, other tricyclic antidepressants or SNRIs.

You also mention trying very low doses of treatments, but have you tried nudging them up a bit more before completely ruling them out? It might be that you're taking subtherapeutic doses.

For example, I took 10mg of amitriptyline and it worked for the first night but not so much thereafter. When I went up to 25mg it worked pretty well every time, though not completely, and I added in naproxen with omeprazole (to avoid stomach issues) before bed to cover the rest.

Good luck!
 
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adambeyoncelowe said:
Being generous, he might just want to avoid you taking opiates long-term. Being realistic, I think he was saying it's not a medical condition. I personally wouldn't want to see a specialist who thinks there's no point treating the illness he specialises in... It makes me wonder what he actually does.

Sadly, I think pain specialists are all going to think similarly. Mostly they're in that 'catastrophising and not enough exercise' camp.

You've already tried some pain relief, presumably through your GP? A GP is likely to just work their way up the analgesic ladder, trying the least powerful drugs before going onto the next, and that might actually be a better option for you than someone who is just going to dismiss you.

There are other options besides amitriptyline and gabapentin, anyway: pregabalin, duloxetine, other tricyclic antidepressants or SNRIs.

You also mention trying very low doses of treatments, but have you tried nudging them up a bit more before completely ruling them out? It might be that you're taking subtherapeutic doses.

For example, I took 10mg of amitriptyline and it worked for the first night but not so much thereafter. When I went up to 25mg it worked pretty well every time, though not completely, and I added in naproxen with omeprazole (to avoid stomach issues) before bed to cover the rest.

Good luck!
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hi Adam just wanted to say, I really appreciate your advice, and you are absolutely right. I suspect if I go to another pain specialist, there's no guarantees that they won't be similar, and I don't want to put myself through that again. I will continue speaking to my GP. (I will go to my NHS appointment later in the year though, just to see if they will provide lidocaine infusions!)

Yes agree with suboptimal doses. I was thinking of asking to increase the nortryptyline. I actually think it's helping my stomach issues, even if I don't see much change in the pain yet. :)
 
The biggest effect I saw from gabapentin wasn't to do with pain.

It seemed to make everything run at the same speed, it was quite disconcerting when I first started on it, but there was no doubt in my mind that internal processes seemed better synced when I took it.

I assumed, simplistically, that as it's a medication to improve nerve function, and several processes in my body may cross co-ordinate using nerves, that improving nerve function, even a little, helped things to run as they were supposed to.

I have no conclusions, just an observation sparked by something in the above post.
 
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