Despite taking my medication regularly, my pain persists?

52-year-old woman2 years ago

Ehlers-Danlos disease persistent pain despite my complex pharmacological treatment

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Naji-tom Samaha · 2 years ago

Hello, thank you for your question!

Would it be possible to know what treatments you are currently taking, and which ones you have tried (without success) for pain?

Thank you

52-year-old woman · 2 years ago

Yes I didn't provide this information because I didn't think anyone would want to tackle my case.

REGULAR MEDICATION

AM = 7am PM = 10pm

DULOXETINE 120mg HS

CYCLOBENZAPRINE 10mg HS

PREGABALIN 50mg HS

METADOL: 10mg AM and 10mg HS regularly + 5 to 20mg PRN (usually 5mg around 2pm)(max 40mg DIE dose very rarely taken because too many negative cognitive side effects e.g. loss of concentration, loss of memory, loss of intellectual acuity, drowsiness)

MODAFINIL 200mg AM (+ 200mg PRN around 12h00 that I never take)

ARIPIPRAZOLE 2mg AM

ESCITALOPRAM 20mg HS

CONCERTA 72mg AM

RITALIN 10mg AM (+ 10mg PRN around 2pm which I take very infrequently when I'm at home, regularly if I'm working (I've been home since April 2019 and I'm starting a new job next January))

D-TABS 10 000U on Sunday

VITAMIN B12 LA 1200mcg AM

PANTOPRAZOLE 40mg BID AM and HS

LOLO 1 co DIE blue tablets only

NAPROXEN EC 500mg DIE PRN 1-2 times per week for headaches

GRAVOL 100mg DIE to BID PRN for nausea due to headache 2-3 times per week (BID intake very very rare)

ATIVAN 0.5mg 1 co PRN for anxiety attacks max 1 time per month

MEDICATION ALREADY TRIED:

METHOTRIMEPRAZINE 2mg for insomnia stopped because too much sleepiness the next day even if taking 1/4 co.

AMITRYPTILINE 40mg HS: stopped because of too much drowsiness and risk of 5-HT syndrome

CYCLOBENZAPRINE 10mg AM and 40mg HS: decreased because of risk of 5-HT syndrome

DEMEROL 50mg 1 to 2 cos DIE to BID stopped because of cardiac risks and ineffective dose (I did not dare to take it regularly)

EPIVAL at low dose stopped because of very severe gastric pain

TYLENOL: Ineffective at regular maximum dose (4g)

DRUG ALLERGIES:

IODE

NATURAL AND SEMI-SYNTHETIC NARCOTICS

CIPROFLOXACIN

I consume alcohol (red wine, of poor quality so as not to develop a taste for it!) from 0 to 5 days a week for my headaches (recommendation of Dr. [...] to avoid taking one more METADOL!( 30ml around 9pm)). I do not consume alcohol in other situations (I do not like alcohol).

I don't use any drugs: neither canabis nor other.

I do not smoke.

I am very obese but not yet morbidly obese!

Naji-tom Samaha · 2 years ago

Thanks for the feedback!

Pain management for this condition is, as you may have guessed, quite complex. However, first and foremost, non-pharmacological measures such as physiotherapy should be put forward: this will not only help prevent deconditioning and counteract overweight, but also aim to relieve the pain and better equip you to tolerate it and remain functional for your daily activities. However, you will have to do the exercises that your physio gives you on a regular basis.

You must also keep in mind that it is unlikely, if not impossible, that your pain will go to 0/10. Your treatment expectations must take this into account. The primary goal of pain relief is a combination of decreasing your pain score but more importantly maintaining your level of function

I can't go into too much depth about your pharmacological treatment, however, an opioid rotation may be beneficial, especially if you have had adverse effects with methadone. Other synthetic opioid analgesics exist such as buprenorphine, which is available in tablets and transdermal patches, among others

For pregabalin, I don't know if it's been tried, but the dose you're taking seems a little low.

As for alcohol, I had never read or heard of it being used for headaches... I don't know if I would encourage you to use it, therefore...

Finally, I think it would be appropriate to have an appointment with your pharmacist to discuss your options in more depth than is possible here. I suggest you make an appointment so that he/she can free up time to review your medications with you, even if it means suggesting changes to your prescriber.

I hope I have been helpful and I am available if you have any further questions!

Tom Samaha, pharmacist

52-year-old woman · 2 years ago

Thank you very much for your response and your time. It is greatly appreciated.

I have already spoken with my pharmacist and like myself she is feeling overwhelmed by my situation. [...]

By asking my question here, I was hoping to get help from a colleague who specializes in pain management. It is possible that you do not yet have someone with this particular experience profile.

Thank you very much again and I wish you a healthy, happy and loving 2022!

Naji-tom Samaha · 2 years ago

Thank you for your feedback!

I just finished a master's degree in pharmaceutical sciences focusing on pain management. Although I can't introduce myself as an expert, I think I'm pretty close

Having written this I am deeply sorry for the situation you are in. Unfortunately the delays for pain clinics are still very long :(

Sincerely

Tom Samaha, pharmacist

52-year-old woman · 2 years ago

Thank you for the clarification of your professional practice and I congratulate you on your commitment to chronic pain sufferers!

Regarding Lyrica, I used to take a higher dose (150mg HS) but I had too much secondary daytime sleepiness. Only the 50mg HS dose allows me to function during the day.

I am already being followed by the Montreal General Hospital pain clinic at the [...] clinic. They are Dr. [...] anesthesiologist (specialist in fibromyalgia and methodology and methadone) and Dr. [...] psychiatrist (specialist in psychiatric and pain pharmacotherapy) who have been following me for over 6 years now. But Dr. [...] told me at my last few appointments that he doesn't believe in Ehlers-Danlos disease. So I'm looking for help elsewhere!

I know that pain 0 is impossible to achieve since I was about 15 years old. Even without a diagnosis I already knew that my problem is chronic

As for alternative treatments, including physiotherapy, I am waiting for service from the Gatineau Rehabilitation Centre. I no longer have any income or insurance for private services.

I hope one day (within 3 1/2 years) to be able to resume the practice of pharmacy. This profession is very important to me.

Thank you again for your help.

And happy new year

P.S. you don't have to answer me anymore unless you have more information to give me!

52-year-old woman · 2 years ago

How can I become your patient even though I am from Gatineau?

Naji-tom Samaha · 2 years ago

I'm sorry for the big delay in responding! I didn't notice the notification :(

I have left the community practice, but I will be more than happy to help you if there is anything.

Sincerely

Tom

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