Pain relief without salicyliates?

[anni66]

Hi. My daughter has just turned 16, and has had ME after Glandular Fever in February/ March 2016. She has been going downhill since September 2016 and is functioning at about 25%. We live in Scotland where there is very little support or medical knowledge re this condition.She has always had localised skin sensitivities ( reacted to bleached food - white rice/ flour/ sugar etc) and had a severe rash reaction to penecillin in tablet form which hospital pharmacist thought may gave been due to E104 colourant. The same additive was in a high dose vit D tablet, prescribed last July ( prior to formal ME " diagnosis") as vit D was found to be low. She had a horrible localised reaction and could have doubled for John Hurt in the elephant man: swollen face, rash, eyelids swollen and puffy ( looked as though she had 8 eyelids) eczema on hands , wrists and inside crease to elbows( which still remains) A different prescription for vit D without E104 provoked a similar but less extreme reaction, which i believe was due to synthetic vit E in the compound, which can be similar in structure to salicylates and benzoate s which have caused issues previously.
She currently has a lot of pain - muscles and joint pain and we have been prescribed amitripyline, however there is no variant the pharmacist can find which does not have salicylate based colourants - she (and I) are worried re reaction given her immune system is so low. Are there any other forms of pain relief which would avoid these problems ?
GP passes problem on to pharmacist who is at a loss.

 

[CFS_for_19_years]

Hi. My daughter has just turned 16, and has had ME after Glandular Fever in February/ March 2016. She has been going downhill since September 2016 and is functioning at about 25%. We live in Scotland where there is very little support or medical knowledge re this condition.

She has always had localised skin sensitivities ( reacted to bleached food - white rice/ flour/ sugar etc) and had a severe rash reaction to penecillin in tablet form which hospital pharmacist thought may gave been due to E104 colourant. The same additive was in a high dose vit D tablet, prescribed last July ( prior to formal ME " diagnosis") as vit D was found to be low.

She had a horrible localised reaction and could have doubled for John Hurt in the elephant man: swollen face, rash, eyelids swollen and puffy ( looked as though she had 8 eyelids) eczema on hands , wrists and inside crease to elbows( which still remains)

A different prescription for vit D without E104 provoked a similar but less extreme reaction, which i believe was due to synthetic vit E in the compound, which can be similar in structure to salicylates and benzoate s which have caused issues previously.

She currently has a lot of pain - muscles and joint pain and we have been prescribed amitripyline, however there is no variant the pharmacist can find which does not have salicylate based colourants - she (and I) are worried re reaction given her immune system is so low. Are there any other forms of pain relief which would avoid these problems ?

GP passes problem on to pharmacist who is at a loss.

@anni66, I broke up your post to make it easier to read.

For muscle and joint pain: acetaminophen (Tylenol) or pregabalin (Lyrica). Pharmacist would have to research pregabalin for salicylate-based colourants though. Acetaminophen (Tylenol) is available without colourants.

If her pain doesn't respond to the above, perhaps opioids (hydrocodone or morphine) might be the way to go. Hydrocodone is available without colourants, but morphine may not be.

 

[anni66]

@anni66, I broke up your post to make it easier to read.

For muscle and joint pain: acetaminophen (Tylenol) or pregabalin (Lyrica). Pharmacist would have to research pregabalin for salicylate-based colourants though. Acetaminophen (Tylenol) is available without colourants.

If her pain doesn't respond to the above, perhaps opioids (hydrocodone or morphine) might be the way to go. Hydrocodone is available without colourants, but morphine may not be.

Many thanks for the editing and quick response- i' ll look into these

 

[CFS_for_19_years]

Many thanks for the editing and quick response- i' ll look into these

If your doctor is still pushing for a tricyclic antidepressant similar to amitriptyline, the other options might be nortriptyline (Pamelor) or doxepin (Sinequan). Doxepin is available as a liquid, which can be helpful for fine-tuning the dose. Amitriptyline is one of the most sedating of all tricyclic antidepressants which is a problem for a lot of people.

I know for a fact that pregabalin, nortriptyline and doxepin come as a white powder inside a coloured capsule and that one can open the capsules and dissolve the contents in juice or add to applesauce. If you're going to work with a pharmacist, you can have them confirm which medications come as a white powder inside a capsule that you can open and then mix with juice or applesauce.

 

[anni66]

Thanks again. Doctor is following standard guidance which is tricyclics for pain and to help sleep.

To be honest neither my daughter nor myself are overly keen ( she generally avoids medication ) - stopping seems to be an issue for some , and there is the chance that:-

Being unaware of pain may give a false sense of security ( she may overdo things and crash)

Some meds inhibit mitochondrial function which seems to be at cross purposes with the condition

But she is currently not in a good place, and decent sleep is a top priority.

Thanks again for this advice, i' ll speak with pharmacist first

 

[CFS_for_19_years]

Thanks again. Doctor is following standard guidance which is tricyclics for pain and to help sleep.

To be honest neither my daughter nor myself are overly keen ( she generally avoids medication ) - stopping seems to be an issue for some , and there is the chance that:-

Being unaware of pain may give a false sense of security ( she may overdo things and crash)

I just now noticed that your daughter is 16. A lot of psychotropic medications have only been tested on adults. Children can have unexpected responses and I've heard that consulting a psychiatrist might be best at this age. However, if that is not something you're not able to do, I understand. There are some good psychiatrists out there who understand ME/CFS, but it sort of depends on where you live.

If pain is interfering with sleep, then pain control should be your number one concern. The type of pain will determine the best pain remedy. If I wanted something for muscle pain, I would choose pregabalin. I've been taking it for nearly 15 years. Pregabalin helps with muscle pain and sleep and is better tolerated than gabapentin (Neurontin), which is in the same drug category (anticonvulsant).

If pain is not interfering with sleep, then it shouldn't be too hard to find a good sleep remedy among the tricyclics or trazadone or mirtazapine. The tricyclics can also help somewhat with pain, depending on the type of pain. Pregabalin and gabapentin (Neurontin) can also help with sleep and pain. Melatonin can help someone fall asleep, but it won't overcome a serious pain problem.

In my decades' worth of experience of taking tricyclics, I never felt that they gave me a false sense of security or made me unaware of pain or that they led me to overdo things and crash. Nor did any of the other medications I mention do that. They take a pain level of 7 down to 5, with 10 being the worst level of pain. I take morphine, hydrocodone, acetaminophen, pregabalin, venlafaxine and quetiapine on a daily basis for the pain of erythromelalgia and I don't feel that they impair my judgment with respect to overdoing things or make me unaware of pain. They might give me some daytime drowsiness but I'm still able to sit up and take care of myself.

I hope you find a good solution for your daughter. Sometimes it's a bit of trial and error. I don't know if you've seen this yet, but it has a good section on medications:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer
http://journal.frontiersin.org/article/10.3389/fped.2017.00121/full

 

[Valentijn]

She currently has a lot of pain - muscles and joint pain and we have been prescribed amitripyline, however there is no variant the pharmacist can find which does not have salicylate based colourants - she (and I) are worried re reaction given her immune system is so low. Are there any other forms of pain relief which would avoid these problems ?

Amitriptyline makes many ME patients feel quite a bit worse anyhow. There are different types of pain, and what helps one person might not help another. But for my inflammation-related pain (chronic headache primarily) 3 grams per day of high EPA/DHA fish oil keeps it away. That might help with joint pain as well.

For my background deep muscle/vascular pain which isn't caused by muscle use, high dose intramuscular injections of hydroxoB12 keep it at bay. And of course careful pacing and not pushing past symptoms can help avoid some unnecessary muscle pain.

 

[anni66]

Thanks for the advice. I have the new paediatric primer and have provided PDF copies to both GP and paediatrician -I will reread the pain section.

We have used fish oils, and will restart these ( starting supplements again after trying to figure out a reaction which turned out to be a reaction to Acetyl L Carnitine which is a bit concerning as she is low on this -just have to up meat consumption)

we can find noone who will do B12 injections ( Paediatrician had never heard of them, and as these are not part of any treatment protocol, NHS will not do them), so am looking for another path for this. B12 test was not low ( we supplement), but this was not an active B12 test, just a measure of all the B12 swilling about in blood. Again, no knowledge of active B12 testing.

Currently using D Ribose, Magnesium, Vit D, Biocare multivitamin and Sunshine Salt ( minerals), Liquid multi B vits with B12 boost.
working up to incorporating Glutithione ( low on test), NAD (Low on test) and Ubiquinol ( CQ10 low on test).

I'm thinking about a 23 and me test, as liver function seems implicated ( sulfonation issues perhaps due to salicyliate, benzoates, and COMT may factor due to stress ( bullying))

In UK it's a whole new ball game to me - previously I had a fair bit of respect for doctors, now it is fast evaporating. My eldest daughter changed from wishing to do medicine, to chemistry after her brother had prolonged post glandular fever and GPs and neurologist were at a complete loss to his symptoms and left us to it.

She's now doing a masters in stratified medicine, and my understanding of biochemistry is growing thanks mainly to this forum. Many thanks

 

[Valentijn]

Currently using D Ribose, Magnesium, Vit D, Biocare multivitamin and Sunshine Salt ( minerals), Liquid multi B vits with B12 boost.
working up to incorporating Glutithione ( low on test), NAD (Low on test) and Ubiquinol ( CQ10 low on test)

Mineral mixes cause me problems, though I'm not sure how common that is, even among ME patients. But it might be something to watch out for. Basically I'm fine if I take it once in a while when having specific problems, but I get horrible lower back swelling if I try to take it daily.

A lot of people have trouble taking glutathione, though I've never tried it myself. But the component of it which is usually lacking is N-acetylcysteine (NAC), which seems to be generally better tolerated. I've also found it helpful for sleeping, since it reduces my wired-but-tired issues.

 

[anni66]

Thanks for info

 

[LivingwithFibro]

Amitriptyline makes many ME patients feel quite a bit worse anyhow. There are different types of pain, and what helps one person might not help another. But for my inflammation-related pain (chronic headache primarily) 3 grams per day of high EPA/DHA fish oil keeps it away. That might help with joint pain as well.

For my background deep muscle/vascular pain which isn't caused by muscle use, high dose intramuscular injections of hydroxoB12 keep it at bay. And of course careful pacing and not pushing past symptoms can help avoid some unnecessary muscle pain.

Do you have a specific brand you stick to? I'd like to try the fish oil for widespread pain.