Help for sufferer with ME and Fibromyalgia please

[drjohn]

One of our members who has both ME and Fibromyalgia requests help with this two-part question: Why do the pains in my legs get unbearable a) after I have been in bed for approximately half an hour and b) when I walk outside? With the fatigue and the pain I have little quality of life. The pain from fm is there constantly throughout all body, low ebb (which is bearable) then high pitch when I could chop legs mainly off. I long to get to bed so whole body gets rested - but then the legs start twitching and leaping (which seems like "restless legs" but I understand that "restless legs" is painless, yet in my case the pain is horrific). I take Coproxamol and Amitriptyline which help when pain threshold low but are of absolutely no use when pain level is high. Pain and fatigue set in very quickly when I am out and I have to sit down for long time before I can carry on I could literally scream with pain. I would be most grateful if you could tell me why pain gets so much worse on the two mentioned occasions and if you can suggest a stronger painkiller for bedtime and for trying to walk outside.

If anyone can help, please let me know. I will pass on any advice and we may all profit from the discussion.

Thank you
John

drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All.org

 

[justy]

Hi John, this is not a scientific answer, but just based on my own experiences.
Firstly if pain is unbearable when walking and have to sit down for long periods then i would suggest this person is pushing too hard and doing to much. Dr. Myhills work on Mitochondrial dysfunction could be worth a look here as she talk about muscle fatigueability and pain. Her answer would probably be that this person shouldnt be out walking if this is the result.
Also the twitching and jumping legs with pain - this does sound similar to restless leg which seems to happen when the body try to relax, mainly at night. I have had a lot of problems with this symptom and it has spread to throughout the day whenever i try to relax. I also now get it all ovr my body with arms and legs etc twitching and flailing around. Again this happens when too much pushing has been done and the more i rest the better it gets (usually) For me Magnesium has been of massive help with this problem. I took just 300mg a day of food state oral magnesium - Natures Own brand and within a couple of weeks my rls syndrome had almost completely gone. It has come back recently but i have been doing more and had also reduced the magnesium dose.
I hope this helps a bit. xx Justy.

 

[heapsreal]

agree with justy on RLS, maybe look into what meds their on as common antidepressants can cause this to happen even commonly used sedating tricyclics like amitriptyline and doxpine even though they are used to help sleep they can cause people to get RLSand worsen sleep. Trazodone is suppose to be RLS friendly and lyrica and neurontin are also used for RLS as well as benzo's. Seroquel which is used for hardcore insomnia can cause this too, so when i use it, which is maybe once a week , i increase my dose of lyrica that night to compensate for RLS.

cheers!!!

 

[alex3619]

Hi, this is mostly speculation, but I have fifteen years of experience with severe muscle pain in ME/CFS, and a keen interest in the science. The problem in walking is probably inflammatory or mitochondrial, or both. Restless legs syndrome may be inducing PEM, especially if the person has been walking. Twitching muscles and jumping legs are still exercise. So the two issues may be the same. It is hard to judge without more information. Rest is supposed to be when we recover, however poor that recovery may be with ME/CFS or fibromyalgia. This person may not be having any recovery time, except when awake with the legs up.

If the amount of walking is reduced, or is kept very brief with regular rest breaks, I suspect both problems will improve, but I don't know if this might reduce the restless legs problem, only the pain. Anti-inflammatories, or anti-inflammatory dietary strategies might also help. I would not recommend stretching or strengthening attempts until after the pain has almost completely gone for a long time. While I know you are aware of the problems with aerobic exercise, I just want to emphasize that aerobic exercise for this person would be the worst possible treatment.

Bye
Alex

 

[Mya Symons]

Hi John. I have FMS also and I have all over body twitching (hard muscle twitching and jerking). I notice that the twitches are worse when I don't get enough sleep or I walk around too much or I come down with another illness, like the flu.

Here is the list of medicines I take that seem to be working o.k. for me now.

-Flexerall at night before bed (it is a muscle relaxer)
-Savella
-Diclofenac with Misoprostol (Diclofenac is an anti-inflammatory and misoprostol is a medicine to protect the stomach lining. I also notice when I do not take an anti-inflammatory, I twitch more. I have no idea why that is.)
-Tramadol
-Lunesta-as a sleep aid sometimes
-Promethazine--for nausea as needed

At one time I was taking clonazepam for the twitching and it worked extremely well for the twitching, but I felt like it was keeping me in a "fog", so I don't take it anymore. I believe that it is a medicine that was originally used to treat seizures, but I am not sure.

I hope this helps. Good luck.

One more thing I forgot--Lyrica or Gabapentin might be an option. They are nerve medicines that work good for some people for not only the pain, but also the twitching.

 

[heapsreal]

Hi John. I have FMS also and I have all over body twitching (hard muscle twitching and jerking). I notice that the twitches are worse when I don't get enough sleep or I walk around too much or I come down with another illness, like the flu.

Here is the list of medicines I take that seem to be working o.k. for me now.

-Flexerall at night before bed (it is a muscle relaxer)
-Savella
-Diclofenac with Misoprostol (Diclofenac is an anti-inflammatory and misoprostol is a medicine to protect the stomach lining. I also notice when I do not take an anti-inflammatory, I twitch more. I have no idea why that is.)
-Tramadol
-Lunesta-as a sleep aid sometimes
-Promethazine--for nausea as needed

At one time I was taking clonazepam for the twitching and it worked extremely well for the twitching, but I felt like it was keeping me in a "fog", so I don't take it anymore. I believe that it is a medicine that was originally used to treat seizures, but I am not sure.

I hope this helps. Good luck.

One more thing I forgot--Lyrica or Gabapentin might be an option. They are nerve medicines that work good for some people for not only the pain, but also the twitching.

if its related to RLS promethazine/phenergan as well as other antihistamines can worsen it, but if u need it then try to counteract rls with the other drugs. I will add one more to your list as it looks good and thats baclofen which is a muscle relaxer and can help improve sleep quality when used with other sleep meds.

 

[drjohn]

Experience is always good Justy, Thanks for taking the time to share this and I'll try to let you know how much it has helped when I have had chance to collate what we find. John xx

 

[drjohn]

Thanks, Heapsreal, it is this measure of agreements and differences that really helps. Best wishes John

 

[drjohn]

Good ideas start this way, Alex. I shall put everything suggested to our friend and see if it helps. Cheers John

 

[drjohn]

Hi Mya Symons, some of the things that appear on your list are also on other people's and, between us, there is a good discussion of what has been favourable or not. So, yes, it does help and thank you very much. John