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

Hi. I would be interested to know what other people do for their pain? For the past few months the whole of my forearms and my wrists and fingers have been in severe pain, following a period of typing too much on my phone, although I didn't realize it at the time. I often get this pain in my legs if I walked just a few more steps than usual but a soon as I rested, it gets better after a while. However in my arms it hasn't gotten better. It does feel better when I rested but as I start to do anything again the pain comes on really badly. I also have fibromyalgia. I cannot type or hold my phone by myself anymore or do any other activities with my hands. I feel very sad.

For the past few months I've tried lots of things, including codeine which my GP prescribed but it caused a lot of stomach pain. I've tried other opioids in the past and they have been even worse and caused me to become very disorientated, dizzy and lethargic. I'm currently taking CBD oil which hasn't really taken away the pain yet, and I'm using lidocaine patches justd on a small area to numb the surface pain. But I'm still in a huge amount of pain and my GP is not really sure what to do about it and has not generally been very helpful.

For the past two months either someone else has to type for me while I dictate, or else I use voice dictation recognition software on my phone.

What do people do for this kind of pain especially when it happens after a period of overexertion?

I am wondering if anyone has tried gabapentin or pregablin or has had access to lidocaine infusions? I know these are pain medications that are available in the NHS in some cases.

I am also wondering what people think about acupuncture? I first started looking into it after seeing on the blog post by someone with ME, they had severe pain and were on opioids but said after acupuncture the pain went away. When I googled it, it seem like there were some research papers and also on a local physiotherapy services website, there was a page all about how acupuncture can help and it said it works by something called the pain gate theory. Has anyone had any experience with acupuncture and are the claims true? Because I am in so much pain I did want to try it, but I am also aware of the fact that I feel pain very strongly due to allodynia and even having needles during blood tests and an EMG scan, I was in a huge amount of pain and I've never been able to tolerate any invasive scans or tests, even before ME.

I would be grateful to know your experiences and thoughts.

 

There’s nothing really that takes my pain away, but the thing that helps me most is heat. Like a hot water bottle or a warm bath (if it’s manageable).

Gabapentn didn’t suit me and effects were not long lasting.

Acupuncture wasn’t something I could tolerate, I was too sensitive in the areas that she was sticking the needles.

 

Benzydaminehydrochloride cream and paracetemol.

When I was at my worse I also needed the immunemodulator but that is not something to take light.

 

To my knowledge, it depends on the quality of pain. If it's more of the burning type (neuropathic pain), anticonvulsants (Pregabalin, Gabapentin) and TCA (e.g. Amitryptiline) are being used.

In my case, Pregabalin and Mirtazapin (I think it's called Remergil in the US) help a lot.
The latter also helps my nausea and dizziness and at my dosage, I have only little side effects.

It really is trial and error, I think. NSAIDS and opioids as well as accupuncture did nothing for me.

 

For me, it depends on the type of pain.

Muscle pain = gentle, even pressure or a warm shower.

Joint pain = warmth, unless it's a recent injury with swelling, in which case ice is better.

Deep aches from over-use or during a cold virus = rest, warmth, and gentle self-massage if possible. The only med that helps is paracetamol, which I find best for this specific type of pain.

RLS = for me this is almost always caused by reactive hypoglycaemia a few hours after a large meal, so half a teaspoon of marmalade or honey.

All types of pain = trying to schedule small distractions through the day such as radio or TV that makes me laugh, a short conversation with a friend, or something nice to eat. This means that when it's really getting to me, I have a plan. I keep a list of podcasts for nighttime pain, which can be a lifesaver.


Gabapentin helped me enormously with specific problems (hot flushes during menopause, and pressure on my bladder during an ME rough patch), but not much generally. It does work for some people, though, as does amitryptiline.

I hope you find some solutions, it really is miserable.

 

Using some form of oral pain relief inevitably ends up being a blunt instrument. I have found it helpful too at times as I have fibro also.

Anything that helps is also inevitably temporary but there are things that have worked for me.

I use hot or cold on the site. It depends on what feels good. And only briefly. I also use a topical cream.
The one I use contains things like wintergreen, menthol, peppermint and eucalyptus. You might have to do some research to see what's available to you where you are.

Next I use a tensor bandage to stabilise the painful area (in my case my wrist). If it's your fingers I think there are splints that might work.

If it's really bad and more areas are affected I'll consider a muscle relaxant. Although when I take them I cut the pill into thirds and only use 1/3 of a full dose.

I try to strengthen the weak area with gentle and brief exercises.

I've also had to learn to take breaks. That part isn't always easy and I do overdo at times anyway. When it's truly bad the pain the next day will go up my arm to my shoulders, neck and sometimes a headache. That's when I reach for pills.

So, anyway this is what I've tried. It's always a temporary fix.

 

Hi @lunarainbows
firstly- poor you! It sounds like you have a particular sensitivity that makes your body's reaction to activity so extreme ( I say this having had ME originally when I was younger and no where near as much pain as I have now age 51) I am in the same boat, so I do understand how hard and frustrated and miserable it can make you.

The bad pain started for me 6 years ago in the base of my spine and has spread. I get muscle, nerve and joint pain everywhere apart from hands, lower legs and feet. Even wearing underwear hurts. When it is really bad it unbearable. Doctors were not that helpful, but with time I have found a couple of medications that help me 'manage' the pain and stop it getting to the point where it is so badly flared up that I am going out of my mind. Both Gabapentin and Pregabalin made me v poorly and CBD did nothing for me

. I now take Amitriptyline at night, and paracetamols regularly throughout the day, with Tramadol and Imigram( for migraines), and occasional Ibuprofen for back up. If I have overdone it I also take the homeopathic remedy Arnica 30.

Things that have helped me:

• Joining the pain forum for people with chronic pain- great info and companionship. This forum is run by a chronic pain sufferer. https://painsupport.co.uk/ )
• Electric heat pad
• Following a plan of how to deal with pain everyday, and on the worst days.
• Meditation/Meditative activities

Most Doctors don't know that much about pain management, and can get rather frustrated with you when you don't respond well to medications. It would be worth going back and asking for a referral to pain management-they might be more helpful. In my area not so much!

Happy to answer questions if you want to message me.
Take care
Helen

 

My pain is in the muscle, and worse when in PEM. On 'good' days it's not present at all. At the moment I just take ibuprofen when it's bad, and that takes the edge off.
I did, however, take Amitriptyline for a while, primarily to help with sleep (semi-successful) and found it really knocked the pain on the head. I had hardly any. I stopped taking it as it was raising my heart rate a bit, which was confusing my health tracking as I use resting HR as an indicator of how well I'm doing.

 

I have found the body scan meditation by Jon Kabat Zinn to be very helpful. It teaches you to separate from the pain.

 

Another thought: a friend with fibro has found Ambroxol, an over-the-counter drug used to clear chest congestion, quite helpful. I think this is something she found online; I'm a bit embarrassed to mention it, and as usual due scepticism should be employed, but it could be worth a bit of reading. She's usually pretty hard-headed herself, but she says it works – I think it was something like £8 for 100 tablets from a pharmacy in Germany.

 

@lunarainbows It sounds like it could be carpal tunnel syndrome. Have you tried splinting your wrist? Mine bothers me when I'm sleeping so I wear a night time splint when I'm going through a flare. If carpal tunnel gets bad enough sometimes it takes surgery to relieve the problem.

 

Your body is telling you to stop typing on your phone so much. I have the same, I get pain in my shoulder, neck and head when I've been using my laptop on the sofa too much. The only thing I can do is stop using my laptop on the sofa for a day or two. It's very frustrating and annoying, but I don't think trying to find something to mask the pain so you can carry on doing the thing that's causing it is going to work. I know it's really horrible, especially as your phone is such a lifeline. Is there another device you can use (for example something with a full-size keyboard) where you'll be in a different position and using your hands and arms differently which doesn't cause pain?

ETA: or I notice you've been using dictation software. Switch to that?

 

I have moderate to severe fibromyalgia and yes, I must stop any repetitive muscle activity because vast areas of my body are centrally sensitized.

I use hot pepper cream (0.1% capsaicin--but have to be careful not to get on hands or privates) for mild pain relief of several hours. It also has beneficial effect on osteo-arthritis pain.

For short term mild pain relief, maybe 15 minutes, I use advanced icy hot, a preparation with 11% camphor and 16% menthol. I put that on and then apply heat and have relief for awhile.

For my daily mod-severe unrelenting pain I use a low dose of the opioid methadone which has some dual effect on pain. NMDA receptor agonist I think it's called.

I have developed no drug tolerance to this dose (I've used the same low dose for 20 years with same excellent effect).

My dose gets rid of the extreme achy-stiffness pain 90-100% which is very good efficacy. But other patients may have untoward effect.

Heat is very very effective, as is ice, which works when heat doesn't.

 

Thank you everyone for your replies. It's been really helpful and I'm going to note down the medication suggestions to discuss with my GP.

I do have an appointment at the pain clinic locally but it's only inanother four months. And I've already had this pain for three months which hasn't gone away.

The hardest thing is being in bed with the pain. Because the only things that I used to be able to do were using my phone lying down, i'm now for the past three months I have an notreally been able to hold up my phone or type. Since the end of August, my mom has had to help me browse my phone and she has been typing for me when I dictate. I've recently started using voice dictation, but it takes so much energy because I frequently have to go back and say delete that delete this. It's also a lot more tiring trying to think of what to say and then saying it, Rather than typing! And so often I asked my mom to clean up the text, like she did for me in this opening post. But at least it's a way for me to communicate sometimes. But even then, I still need to touch my phone to open webpages, Scroll down open emails etc. I've tried doing that using the voice control on my phone but it's so often doesn't do what I tell it to or I end up repeating and myself 10 times and then having to tap the phone anyway!

I'm not really sure how much less I can do. That's what's making me so sad. At the moment I'm still using my hands to turn on my audiobooks and press rewind or forward as my attention wondeare so much. And even that is causing pain.

I am going to try to reduce the amount that I pick up my phone, even if I'm not typing.

I agree I think my body is definitely telling me to stop and I didn't realize until it was too late.

I feel happy that I'm not alone, although of course I don't wish pain on anyone else.

Thank you for the medication suggestions. I would really like some relief from the pain. With severe ME I do you react badly to some medications, so I think it will be trying and era. I do use a lot of heat in fact I've ended up with a burn rash on my arms so I've had to reduce that! I will use cold in start instead.

The website that was mentioned was really helpful. I'm going to download some of the meditations I will ask my mom to help me was looking through the website.

Sometimes I'm not sure whether the pain is coming from fibromyalgia or from ME or just something else. As I hadn’t really come across many people who get very severe pain from small movements? And it just hasn't gone.

Again sorry for that I was in the dictation errors. It's difficult to go back and keep saying delete that, is it often just types the same thing again!

Edited to add I don't think it's carpel tunnel syndrome, thank you for the suggestion, the reason I am saying this it's because the pain is I denticle to the burning pain I get when I over exerted my legs. The only difference really is that it hasn't gone. I've tried a splint and it made the pain a lot worse.But I will discuss everything with my GP just in case.

 

Overuse injuries can be exceptionally painful. I had one in my shoulder, and literally couldn't even lie down for months on end (I have hypermobile shoulders that can't be kept in place even with strapping). I've never been so miserable, or in so much pain, for so long.

Mine was caused by using a wide keyboard on a desktop computer at work. My mouse hand was forcing my shoulder into a funny angle because of the number pad on the right-hand end, and when you work a hypermobile joint at the wrong angle for week after week, it's asking for trouble.

I was referred to pain clinics, specialist physios, etc, and everything they told me to do made it worse. After five months off work, more than a dozen appointments, and only worsening pain, they finally referred me to a consultant anaesthetist. She made me sit at her desktop computer and show her the position I worked in; it took her three minutes to work out that I just needed to spend £10 on a small laptop-sized keyboard, and my shoulder would recover. She was right.

I absolutely agree about the dictation software. My company spent quite a lot of money on a program for me (this was years ago, before smartphones etc), but it was much more exhausting than just typing with my left hand. It's hugely frustrating not being able to use your lifeline, specially as you can't get out, but the injury needs time to heal – try not to do what I did, and make it worse!

 

Small movements are, at least for me, much more 'demanding' than larger ones - I assume it's down to them needing to be more precise, the amount of control required is greater, which is more tiring.

e.g. I can, usually pick up a cup and drink with no pain, but shaving, or brushing my teeth - much more demanding, tiring and painful, even though a manual razor is much lighter than a full cup.

 

Topical warm/cool.

Resting from whatever is making it worse.

Gentle movement and change of position/posture/side (e.g. so if you’re usually lying on your back try your side or your tummy for a little while each day - it makes everything you do from there use different muscles/joints/gravitational direction).
Unless you’re in a floatation chamber, you’ll be using some muscles and body parts (to stabilise etc) so moving gently can, ironically, rest those bits.

I find ibuprofen helps some kinds of pain and paracetamol makes any relief I do get last longer. The effect of each seems pretty subtle but every little bit helps.

Distractions: having something to absorb my mind can help, whether that’s entertainment like an audiobook or meditation to help disconnect (from the unpleasantness of pain, just make it a fact, not something that matters), it can help. It has to be something that doesn’t let me forget to notice if my body needs something (food, water, to move something that has been held tense etc).
When I’m really bad, all I can do is lie still (no thoughts, not trying, just blank) and look at the view. I’m so lucky to have a good one.

I’m sorry. My pain is much less than yours but I do feel for you.

 

I have to be careful with painkillers because I have an extremely low threshold for injury and can easily exert myself. The pain is localized and accumulates the more I use that part of my body. I call it PERI - Post Exertional Rheumatic Injury. The damage can be permanent. I use to take Gabapentin but have built up tolerance. Lyrica never worked for me. Tramadol gave me bad side effects.

Acupuncture is a quack therapy.

Have you tried something like this:

I'm 100% bed bound and use a phone holder that is attached to my desk. I use my nose to type everything, I wish I could draw so I could show you exactly what I mean.

 

I get similar problems and have done for years (before I got ME) because I'm a writer. Naproxen and amitriptyline before bed seem to help a little.

Really gentle rotating of my hands at my wrists (learned from a ballet dancer I once knew) seems to help maintain flexibility without having to overexert.

 

@lunarainbows,


my pain symptoms sound very similar to yours. Some things come to my mind that may not be directly related to your original question but I think are applicable.

I am not sure where you were located but if you are dealing with the United States medical system, I found becoming assertive (and respectful) in dealing with the medical professionals and staff helps a lot. You are scheduled four months out for a appointment. In the chronic pain world, one mantra is that the sooner you treat it, the better. I’m not sure if that’s actually true but.... If it was me, I’d lobby for a MUCH sooner appointment or find a different pain clinic with earlier initial appointments if those are options for you. The professionals you choose and how experienced they are and how they relate to you matters.

Another item that seems to be quite helpful is to have a patient advocate in the room with you. This could be a relative or a friend. It changes the personality dynamics with the medical professionals.

I’m like you, typing or using a computer (clicking a computer mouse with my right hand is excruciatingly painful for me) or touchscreen in any way is extremely painful. I use voice dictation and have for 25 years now. Using a wire mesh tipped stylus and voice dictation extends my ability to use an iPad. My experience is that voice dictation (Dragon NaturallySpeaking) is far superior on a PC with a dedicated high quality microphone. My experience is that Google’s voice dictation is much superior to any others on a phone. Either way it’s a struggle and painful enough that I don’t post much on forums because of this.

Also, try to learn some language that allows you to separate out the different types of pain that you are experiencing and express it to others. It took me an extremely long time to realize the different textures and frequencies of the pain might represent different causative factors. This information could be very useful to a medical practitioner.

Finally, I have found it useful (and most practitioners I’ve ever consulted with have thanked me for it) is to come prepared with a written document describing your history and symptoms, etc. I did this because I was constantly forgetting to say certain information in the consult, and then regretting it. Now I go in with everything documented on paper and then let the practitioner ask additional questions.


Best of luck to you.