4

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Fibromyalgia and everything else...

Answered on August 19, 2014
Created June 04, 2011 at 2:49 AM

I have had fibromyalgia for over 30 years, along with chronic fatigue, degenerative disc disease, irritable bowel syndrome, Microscopic colitis, arthritis and who knows what else. I'm so discouraged because I treat one thing and another flares up. Currently I'm taking Cymbalta, Vitamin D, Ultracet, magnesium and fosamax with little relief from pain. I used to have good days but now I can't remember one. I'm a type A personality, was always very active but couldn't seem to pace myself...ending up with a major flare-up. I don't sleep much at all until I'm totally exhausted and then I crash no matter what time of day or night, usually day. When I finally sleep, I'm still so stressed from the pain (I guess), I clench my teeth and have fractured many. I chew through mouth guards regularly. I'm so tired I don't think I have the energy to even start a program but I need help. I'm 64 years old, feel ninety although people look at me and think I'm in my 40's...mom's good genes. I have so many doctors for so many different things and I'm not making any progress. Right now, my hands and arms are in constant pain as well as my low back and knees (which is new). How can I get started on this diet when I can't even go grocery shopping without landing in bed for two days? Any suggestions? Joann

138212dcdc587aa19d6c3dcc097af14a

(20)

on June 07, 2011
at 10:45 PM

Thank you everyone for all your input. I'm going to be talking with my doctor about all this and I know he is very open to finding other solutions. He doesn't push medications and that's why I first went to him with his knowledge of fibromyalgia. I really appreciate your input.....

6f97d1b544380ac1f2dbf95d11f25971

(135)

on June 05, 2011
at 09:42 PM

I definitely agree.

Aaf41dd75cc92e2921d0dbdb15bb100a

(40)

on June 05, 2011
at 06:53 PM

I was diagnosed FM many years ago, which I consider a meaningless world, although I find cortisol and leptin theories very interesting. I've never said "it's in the head" as it is was something ethereal, of course the pain and symptoms are very real. And this make it very hard to treat. This is the reason why I say medication (or surgery) won't help, if your pain disappears it will appear in some other form on some other place. I've had pain and numbness in the arms for 4+ years (and still have some other symptoms as the OP describes) and healed overnight. I know what I'm talking about.

A68f24168bc0de414a038037e287b581

(4896)

on June 05, 2011
at 02:45 PM

I think people with FM have heard enough about "it's in your head", thank you very much. Therapy can help with relaxation methods, which is important, as stress causes worsening of symptoms. it's easy to say "don't obsess with the pain", more difficult to live with it.

Ed71ab1c75c6a9bd217a599db0a3e117

(25477)

on June 04, 2011
at 05:39 PM

I have a lot of fm patients. Got to be patient. But once you fix the biochemistry you will recover. I promise to cover this in my blog. Explaining leptin is a long process. Fm patients also need lots of supplements in evolution

21fd060d0796fdb8a4a990441e08eae7

(24543)

on June 04, 2011
at 05:20 PM

Good advice to not obsess with the pain. But bad advice about pain medication and the physical nature of the problem. Fibro sufferers have quite different nervous systems than the average dude/dudette. For example, higher levels of substance P, implicated in greater pain responses. If one has intractable pain (defined as causing systemic changes such as increased blood pressure and increased cortisol secretion), and one does not nip it in the bud using things like pain medication, that is when real trouble starts. This is a highly variable issue between different patients though.

6670b38baf0aae7f4d8ac2463ddc37c0

(3946)

on June 04, 2011
at 05:56 AM

I agree, it has to be VLC Paleo.

6670b38baf0aae7f4d8ac2463ddc37c0

(3946)

on June 04, 2011
at 05:56 AM

I am sorry that you are not able to go to the grocery store without landing in bed for two days; but whether you go to the grocery store for crappy food or for better foods, it is still the same two days, so just go for it.

06d21b99c58283ce575e36c4ecd4a458

(9948)

on June 04, 2011
at 03:03 AM

http://jackkruse.com/jacks-blog/ Click around on the buttons. Read the quilt section.

06d21b99c58283ce575e36c4ecd4a458

(9948)

on June 04, 2011
at 03:02 AM

http://jackkruse.com/jacks-blog/ Click around on the buttons. Read the reading Quilt.

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9 Answers

2
Ed71ab1c75c6a9bd217a599db0a3e117

(25477)

on June 04, 2011
at 03:00 AM

you must start first by understanding this process will be longer for you because fibromyalgia is complete leptin resistance at the brain hepatic and muscle levels. I know you are having a tough time but you must make changes slowly. GO take a look at my blog today I uploaded the first part of why leptin is critical. My prayers are with you but do not give up. You can beat this if you just stay consistent and do it at your own pace. Dr. K

06d21b99c58283ce575e36c4ecd4a458

(9948)

on June 04, 2011
at 03:02 AM

http://jackkruse.com/jacks-blog/ Click around on the buttons. Read the reading Quilt.

1
6670b38baf0aae7f4d8ac2463ddc37c0

(3946)

on June 04, 2011
at 05:53 AM

Joann, I was diagnosed with fibromyalgia for several years, with all of the pain, no sleep and the myriad of countless symptoms that go along with that diagnosis. Looking back, I believe it was actually dysautonomia, which I am officially diagnosed with now, but either way, here is what I did:

  1. Stopped taking all pain medications. Turns out they were not working anyway. I was not in any more pain without the medications. I did this slowly to avoid any withdrawal symptoms or other issues from stopping suddenly.

  2. Stopped taking all sleep medications and started taking Edurolytes by Hammer Nutrition. This is when I started sleeping for the first time in 6 years. I think it was a combination of getting off of all the drugs and the addition of the electrolytes from the Endurolytes. In case anyone else is interested, Edurolytes are also excellent for Restless Leg Syndrome.

After I started sleeping, many things improved. However, I was still in a good deal of pain. I started Paleo in December of 2010 and did not see any improvement in the pain level for about two months. I am now almost entirely out of pain after about 6 months on Paleo. One thing, be sure to eliminate all nightshades. Also, if possible, get allergy tested for your foods.

Please listen to Dr. K., he is brilliant. I had no idea about the leptin connection. I wish you all the best and hope that you are feeling better soon. Hang in there, be patient, and know there are others here who understand exactly what you are going through.

Ed71ab1c75c6a9bd217a599db0a3e117

(25477)

on June 04, 2011
at 05:39 PM

I have a lot of fm patients. Got to be patient. But once you fix the biochemistry you will recover. I promise to cover this in my blog. Explaining leptin is a long process. Fm patients also need lots of supplements in evolution

6670b38baf0aae7f4d8ac2463ddc37c0

(3946)

on June 04, 2011
at 05:56 AM

I am sorry that you are not able to go to the grocery store without landing in bed for two days; but whether you go to the grocery store for crappy food or for better foods, it is still the same two days, so just go for it.

1
E7320c552ab7453d2ff45d4be79f6b50

on June 04, 2011
at 03:57 AM

Paleo will help your condition....but not regular Paleo. Over-consumption of refined Carbohydrates are antagonistic to your condition. You need to stay very-low-carb Paleo. No Fruit, No Sugar, No Starches (sweet potatoes etc). Aim for less than 50grams of carbs per day. If you do that, you'll see a significantly faster improvement in your condition....in as little as a few weeks to a month.

6670b38baf0aae7f4d8ac2463ddc37c0

(3946)

on June 04, 2011
at 05:56 AM

I agree, it has to be VLC Paleo.

6f97d1b544380ac1f2dbf95d11f25971

(135)

on June 05, 2011
at 09:42 PM

I definitely agree.

0
C03f4ae70b97072c71376c87a87ced33

on March 11, 2013
at 04:59 PM

I have had FMS for a long time too. I know how it hurts and know how sleeping or rather not sleeping and being tired all the time can debilitate ones life. This diet will help, but I had a great success with Dr. Jacob Teitelbaum's SHINE protocol. I read his book, so did my great doctor and after 6 months of using it I'm much better :). Please consider reading "From Fatigued To Fantastic" and implementing it. In addition to this treatment I started "The Rosedale Diet" - very similar to Paleo diet- 2 months ago and I keep improving almost every day. I hope this helps :).

0
6f97d1b544380ac1f2dbf95d11f25971

on June 05, 2011
at 09:36 PM

I completely understand the pain and hopelessness that comes with Fibro. Most of my childhood and young adult life was robbed by this condition.

You must find the will to try the diet, even if doing initial shopping fatigues you it will be worth it in the end. I saw my major symptoms disappear in the first 2 weeks and I had been suffering for 15 years since the age of 11! This diet will help you, once you get out of the "carb flu stage" i'm sure you will start to see improvements. I also agree about reducing carbohydrates. I have been doing this for 3 months and can handle sweet potatoes but if I go past 50 or 60 grams of carbohydrate i will see small flare ups of muscle and bone pain. The burning and tingling has gone away for good though, as has the inexplicable stabbing abdominal pain (maybe IBS). I have faith that you can try this diet and begin to heal your body.

Good Luck!

0
A68f24168bc0de414a038037e287b581

on June 05, 2011
at 02:43 PM

I was diagnosed with FM only about three years ago, but had it for at least ten years prior to it. I was lucky that it was pretty mild, compared to what other people have to go through. My biggest problem was the constant fatigue, not restoring sleep, joint pains and the chronic pain, which was annoying, but not excruciating. I was on cymbalta, some other I can't remember, CoQ10, nothing ever helped.

I went on paleo for totally different reasons (after reading Good CAlories Bad Calories it simply made sense). After only a few months I realized that I have energy after work (generally all I could do is to get through work and then basically collapse at home), I felt like cooking, I started to exercise again with no joint pain! I could walk for longer and longer, and with time almost all of my FM symptoms disappeared! I still have the trigger points and over sensitivity to touch (when I hit something or scratch myself too hard), sleep is not perfect but improved.

Please, try. You will be surprised how it slowly goes away. I think the grains and sugar are the most evil in it all... I would just dive in cold turkey, after week or two you won't be able to believe you ever ate other way!

Good luck :)

0
Aaf41dd75cc92e2921d0dbdb15bb100a

on June 04, 2011
at 05:00 PM

Since your symptoms are many and keep changing and appearing in new places I would say that your problem is not physical (besides the occasional x-ray confirming some normal degeneration at your age, or not). Search for a good therapist who can help you. Pain medication won't help you.

A good diet and exercise will improve your condition, of course. Keep in mind that at the beginning of the paleo diet you may get the paleo-flu which will increase your general bad mood temporarily (your mind will resist to any change on your routine actually). By all means walk to the store, don't obsess with the pain. Keep an active life don't let your fear cripple you.

If you got more questions just ask. Good luck.

21fd060d0796fdb8a4a990441e08eae7

(24543)

on June 04, 2011
at 05:20 PM

Good advice to not obsess with the pain. But bad advice about pain medication and the physical nature of the problem. Fibro sufferers have quite different nervous systems than the average dude/dudette. For example, higher levels of substance P, implicated in greater pain responses. If one has intractable pain (defined as causing systemic changes such as increased blood pressure and increased cortisol secretion), and one does not nip it in the bud using things like pain medication, that is when real trouble starts. This is a highly variable issue between different patients though.

A68f24168bc0de414a038037e287b581

(4896)

on June 05, 2011
at 02:45 PM

I think people with FM have heard enough about "it's in your head", thank you very much. Therapy can help with relaxation methods, which is important, as stress causes worsening of symptoms. it's easy to say "don't obsess with the pain", more difficult to live with it.

Aaf41dd75cc92e2921d0dbdb15bb100a

(40)

on June 05, 2011
at 06:53 PM

I was diagnosed FM many years ago, which I consider a meaningless world, although I find cortisol and leptin theories very interesting. I've never said "it's in the head" as it is was something ethereal, of course the pain and symptoms are very real. And this make it very hard to treat. This is the reason why I say medication (or surgery) won't help, if your pain disappears it will appear in some other form on some other place. I've had pain and numbness in the arms for 4+ years (and still have some other symptoms as the OP describes) and healed overnight. I know what I'm talking about.

0
23cdea3bba94e17d2b58b525773d0c0a

(729)

on June 04, 2011
at 06:45 AM

I have (had- I rarley get flare ups anymore) fibromayalgia AND IBS among other issues. I would ditch the pharmacuticals, seriously, avoid inflammatory foods like, grains (esp. wheat!!!), nightshades, preservatives and MSG and do some serious gut healing. You should maybe look into GAPS diet and get some good quality probiotics and cod liver oil/high vitamin butter oil blend. Try curamin for pain and flare ups. I hope you find the answers and relief you're looking for.

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