Severe body aches

[morgan_25]

I have seen some people say in here that pain is not a huge issue for them with their ME/CFS. I have severe pain especially if I over exert myself. It’s like growing pains times 20.

 

[GreenEdge]

I find Pregabalin (Lyrica) works well for me, but only when taken before bed. It helps me to fall asleep and feel more recovered the next day. If taken during the day it makes me feel awful.

Pregabalin (Lyrica) is a medication used to treat epilepsy, neuropathic pain, fibromyalgia, restless leg syndrome, and generalized anxiety disorder.

I also take small amount (5mg) of muscle relaxant called Baclofen. I find together they have a synergistic effect.

Some possible ideas to talk to your doctor about. I hope you find a solution that works for you.

 

[morgan_25]

I find Pregabalin (Lyrica) works well for me, but only when taken before bed. It helps me to fall asleep and feel more recovered the next day. If taken during the day it makes me feel awful.

Pregabalin (Lyrica) is a medication used to treat epilepsy, neuropathic pain, fibromyalgia, restless leg syndrome, and generalized anxiety disorder.

I also take small amount (5mg) of muscle relaxant called Baclofen. I find together they have a synergistic effect.

Some possible ideas to talk to your doctor about. I hope you find a solution that works for you.

My dad takes Lyrica and it seems to help him however, I think it does kind of knock him on his butt. He will take it during the day and be asleep most of the day. Once I can find a doctor that will treat me, I will definitely discuss this with them. Thank you!

 

[PatJ]

I usually only experience pain if I've overdone it. I get 'coat hanger pain' in my shoulders and upper back. Now that I've learned to read my body and pace myself properly to avoid PEM I'm able to avoid it.

 

[bertiedog]

Recently I have been experiencing a lot of pain especially on one side of my lower back and it causes like a sciatica which isn't great because I have had sciatica on the other side for 20 years after falling off a horse.

I also have osteoarthritis which can be painful at times as it seems to flare but as I am now 72 I guess a lot of this is not due to ME but instead to ageing and also to my genetics as my father also had osteoarthritis with similarly looking hands and feet to mine!

I refuse to let it stop me doing things for the most part but there are occasions when I have done a bit too much in the garden that I do just have to stop and give in and be sensible.

There seems to be a lot written about central sensitisation and chronic pain and my physio is often talking about this.

Pam

 

[morgan_25]

I usually only experience pain if I've overdone it. I get 'coat hanger pain' in my shoulders and upper back. Now that I've learned to read my body and pace myself properly to avoid PEM I'm able to avoid it.

Man I wish but my body’s idea of being pushed too far could be just me walking to the mailbox. 🙄 recently even though I’ve been in bed mostly, I am still struggling with a lot of pain especially migraines, back and leg pain.

 

[valentinelynx]

I have seen some people say in here that pain is not a huge issue for them with their ME/CFS. I have severe pain especially if I over exert myself. It’s like growing pains times 20.

As do I, though I don't know what growing pains are like. But I have all-over body pain, some in joints and muscles and some is a diffuse burning sensation.

 

[gbells]

Lyrica gives me ataxia so bad I have trouble walking. Gabapentin for me instead.

 

[PatJ]

migraines, back and leg pain

Have you tried supplementing with magnesium? Migraines, especially combined with muscle aces, might be from low magnesium. People with ME/CFS are often low in magnesium, and sometimes potassium.

 

[lenora]

Hello Everyone....That's the thing with this illness, we're all different in how it affects us, at least for the most part. I suffer not just pain, but severe pain that was initially caused by surgery, and ME eventually took over the rest of my body. So, yes, some people with FM do have rather severe pain. I know some of mine is due to my neurological illnesses, but the symptoms are very much the same as those who have never had surgery.

As for lyrica, I take 75 mg. 2 x/day, along with a number of other drugs. There is no question that lyrica (originally gabapentin) slows down the pain signals from the brain to the spinal cord. Yes, it takes time to adjust to the meds, but I know that and the payoff is worth it to me. I have terrible trouble sleeping....about as bad as you can imagine. I know part of it comes from damage to the brain, but each time I go to the hospital and I'm put on steroids or given anesthetic it can take me mos. to establish any sort of decent sleep routine. I'm really lucky if I get 2 hrs./day and that's a stretch. And yes, it's possible to go without sleep for weeks at a time, or at least extremely small amounts of it. Not much fun, but I don't let myself get upset about it any longer...it's just the way things are and I'm so glad my husband is a good sleeper b/c it would be terrible to keep disturbing each other.

I was on baclofen years ago, large amounts of it and it affected me in an odd way. My already out of control sleep would see me rendered unconscious for about a day and then I couldn't sleep for I can't remember how long afterwards. It would almost make me I guess what could be described as "high." It also put weight on me, but then that seems to be a side-effects of many meds.

I've gained about 35 lbs. since January. True, I was somewhat underweight before, but this is ridiculous. I have a number of the new meds that may be culprits but I can assure you that it's not my fault. The heart treatment drugs seem to be especially bad and, since I have 5 stents, I have no choice. I presently have Congestive Heart Failure. I just have a lot of assorted serious problems, but so do many people. I need to feel that I can overcome things....talking to people helps immensely and I do think there is such a thing as the mind/body connection. I've just seen and felt it too many times to think otherwise.

I'm a believer in vitamins/supplements, but also believe that since they're supposed to be "natural" substances we can do considerable harm to ourselves. You have to study and be high knowledgeable before playing around too much. Do I like taking prescription meds. No, of course not. If I had my way the only things that would enter my body would be food, tea and water. How I've ended up with 5 stents is anyone's guess, although my father died of heart disease at age 40. Genes, good or bad, we all have them.

I hope you're all having a decent day and findinh some joy along the way. Take good care. Yours, Lenora.

 

[lenora]

Hello Everyone....That's the thing with this illness, we're all different in how it affects us, at least for the most part. I suffer not just pain, but severe pain that was initially caused by surgery, and ME eventually took over the rest of my body. So, yes, some people with FM do have rather severe pain. I know some of mine is due to my neurological illnesses, but the symptoms are very much the same as those who have never had surgery.

As for lyrica, I take 75 mg. 2 x/day, along with a number of other drugs. There is no question that lyrica (originally gabapentin) slows down the pain signals from the brain to the spinal cord. Yes, it takes time to adjust to the meds, but I know that and the payoff is worth it to me. I have terrible trouble sleeping....about as bad as you can imagine. I know part of it comes from damage to the brain, but each time I go to the hospital and I'm put on steroids or given anesthetic it can take me mos. to establish any sort of decent sleep routine. I'm really lucky if I get 2 hrs./day and that's a stretch. And yes, it's possible to go without sleep for weeks at a time, or at least extremely small amounts of it. Not much fun, but I don't let myself get upset about it any longer...it's just the way things are and I'm so glad my husband is a good sleeper b/c it would be terrible to keep disturbing each other.

I was on baclofen years ago, large amounts of it and it affected me in an odd way. My already out of control sleep would see me rendered unconscious for about a day and then I couldn't sleep for I can't remember how long afterwards. It would almost make me I guess what could be described as "high." It also put weight on me, but then that seems to be a side-effects of many meds.

I've gained about 35 lbs. since January. True, I was somewhat underweight before, but this is ridiculous. I have a number of the new meds that may be culprits but I can assure you that it's not my fault. The heart treatment drugs seem to be especially bad and, since I have 5 stents, I have no choice. I presently have Congestive Heart Failure. I just have a lot of assorted serious problems, but so do many people. I need to feel that I can overcome things....talking to people helps immensely and I do think there is such a thing as the mind/body connection. I've just seen and felt it too many times to think otherwise.

I'm a believer in vitamins/supplements, but also believe that since they're supposed to be "natural" substances we can do considerable harm to ourselves. You have to study and be high knowledgeable before playing around too much. Do I like taking prescription meds. No, of course not. If I had my way the only things that would enter my body would be food, tea and water. How I've ended up with 5 stents is anyone's guess, although my father died of heart disease at age 40. Genes, good or bad, we all have them.

I hope you're all having a decent day and finding some joy along the way. Take good care. Yours, Lenora.

P.S. I also wanted to mention that the burning pain is actually nerve pain. It hurts a lot, doesn't it? Today there are compound ointments (made with a mixture of ingredients) available. If you're interested in getting a prescription for one, kindly call around and find out where a compound pharmacy is (you may have to do it by mail order), let me know and I'll give you the ingredients. Then you'll need a prescription from your Dr. Many don't know about this, but if you have someone sympathetic to pain it shouldn't be a problem. Also, ice packs help immensely with deadening pain. Ace makes a blue fabric covered one that doesn't freeze as hard as a rock. I would get the largest size, place it along your spine as it covers most affected nerves and lay on it for about 20 min. The rote is generally 20 min. on & 20 off. Wrap lightly the bandage in a very thin teatowel before using. Yes, heat sounds better but the fact is that nothing works better than ice. Buy 2 or 3 as you'll want to get the pain under control if you're having an out of control attack. Also, I've found the ointment best in a tube...you get more for your money because you can cut it open at the end and get another 3 to 4 days worth of cream out of the tube. That burning pain though.....! Let me know if you want the ingredients for the ointment....I'll warn you that it's expensive, so you don't want to waste it. Yours, Lenora.

 

[morgan_25]

As do I, though I don't know what growing pains are like. But I have all-over body pain, some in joints and muscles and some is a diffuse burning sensation.

Yeah it’s like the most painful dull ache you’ve ever felt in your life 😭

 

[morgan_25]

Have you tried supplementing with magnesium? Migraines, especially combined with muscle aces, might be from low magnesium. People with ME/CFS are often low in magnesium, and sometimes potassium.

I have not. I don’t know much about which supplements work for what and I have tried multiple supplements in the past with no results so I kind of just said to heck with the supplements.