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Posted 6/22/2015 2:40 PM (GMT 0)
Hello and happy Monday, everyone!

This is my 2nd post here -- the first, back in March or so, was just asking questions about whether or not what I have may be fibro. I'm 90% sure that it is now, that or myofascial pain syndrome (or a bit of both). My mom was diagnosed with fibro recently, and my maternal aunt has had it for years.

My pain is 99% upper body. I have had trouble sleeping. Muscle spasms and twitches; worse at night (and those are mainly shoulder blade muscles and muscles between ribs in back). Headaches (ranging from dull "sick" headaches to all-out migraines).

All of my blood work = normal, except for slightly elevated blood calcium levels (I quit taking a calcium supplement at that point). Talked to internal medicine doc and he was willing to treat me since I was flat-out rejected to be seen by rheumatologists (even with his referral and personal phone call to ask if they'd make an exception).

Doctor prescribed Cymbalta for me but I never took it; called him a week later and explained I've taken all of the SSRIs on the market (except for Paxil and Prozac) in the past for anxiety and depression....and I know how I feel on those, and the side effects are NOT worth it. I asked if I could try natural therapies instead and after researching them, he ok'ed me to take:
50-100mg 5-HTP daily
Magnesium Malate (625mg daily)
D-Ribose (5g daily)

Immediate improvement in sleep with 5-HTP (and mood). BUT, this is month 4 on it and it's starting to feel like I'm having the opposite effect. I'm now waking up again 5-6 times a night.

Ribose helps with pain somewhat but better helps with fatigue (gives me energy boost when I need it). It has also helped my irregular heart beat.

Magnesium? I can't tell. I think sometimes I feel WORSE on days I take it then when I don't. The calcium I quit taking (which I DID feel more pain on) was a Cal-Mag blend, so now I'm wondering if it wasn't just the calcium making me hurt -- maybe I'm not deficient in magnesium like so many people are....maybe it's having the opposite effect.

I read that if you get worse before better on magnesium, you're not taking enough -- to increase the dosage and wait a few weeks. I'm scared to, though!

As of today, I'm taking a week off of 5-HTP to see how I feel. If I don't feel like I'm slipping backwards, I may set that one aside.

Other than physical therapy/message/pressure point therapy, I don't know what else to do. I have always had this muscle pain near and during my monthly cycles, so I know hormones worsen it. I had a partial hysterectomy in Nov. (left 1 ovary) and instead of helping, I have been feeling 10x worse. Doc thinks the surgery was the catalyst to set off this current "flare." I've heard the flares can last for months. I just don't want the rest of my life to be like this! (I'm just 37.)

I'm just looking for advice from those who have tried (or have success with) natural remedies/supplements/treatments. And some hope that this current flare (hurting 4-5 days out of 7 every week!) will eventually subside and this isn't my "new normal."

Thanks in advance.


smilewinkgrin
Posted 6/22/2015 3:07 PM (GMT 0)
Welcome. I am sure others will come along who promote a more natural approach. I take supplements, but also medication. I also exercise and eat relatively healthily. I use mindfulness as well. I prefer to manage the condition so that I can still participate in my life, rather than have my health be the constant definer of me.

Here is my thought on natural--and nothing more than my own perception. Humans have changed radically. So have our lives. Between pollution, tainted water, modern electronics, lack of exercise, living arrangements, families, the changes of our landscapes, I think that the effects of natural products are perhaps a bit too hopeful a response to a condition that modern life aggravates.

Everyone must make their own choice as how best to approach this. Our lives are so radically different from one another, as well as unfathomable from people even 100 years ago, that we as patients must develop our own best fit.
Posted 6/22/2015 3:40 PM (GMT 0)
I use both meds, supplements and other alternative ways to help myself, as well as manipulative therapies.

Took a virus end of last week, still feeling very tired from it.
Posted 6/22/2015 5:28 PM (GMT 0)
I am taking a mix of medications and supplements. I did first try 5-HTP and melatonin. I have had sleep difficulties for a long time. I thought the 5-HTP was helping some with pain. I had no problem with melatonin but it did not help with my sleep difficulties totally. I stopped using both products when I went back on Nortriptyline. That med does help me sleep. It does not work as well when I am fighting a virus or if I am dealing with much stress.

I used to take calcium supplements and I also used a blend of calcium, magnesium and sometimes with vitamin D3 or Zinc. I am lactose intolerant. I can eat yogurt. I have now been told that my body would work better if it got the calcium from food sources. I do still use a multivitamin which has some calcium in it. It is quite a challenge to get the required amount of calcium from food sources. I am in my 60s, well past menopause.

I can understand why people are fearful of medications but you don't know if it will help you until you try them. You have to try to function in some way so, yes you try to find something that might fight the symptoms. There is no cure for Fibromyalgia.

I am taking Magnesium supplements. I recently tried a Magnesium Malate product. I really did not find it helped a lot for the pain. I have gone back to Magnesium Glycinate. I also found a product called Magnesium Natural Calm helped some with constipation, when I took it at bedtime. I have read that you could take too much magnesium but your body does use it for many functions so it is difficult to take too much if you follow the instructions on the bottle.

I am not in the US. I have never had magnesium levels checked. I had Vitamin D checked once. With the 5,000 IU of Vitamin D3 I take my Vitamin D levels were perfect a Doctor told me. I also use an Omega 3, CO Q10 with plant sterols supplement.

I am on an NSAID - Naproxen, Muscle Relaxer - Baclofen, Anti-depressant - Nortriptyline (for Neuralgia), and Synthroid. Also use a very miminal dose of HRT - Premarin. I only periodically take Tramadol when I am in severe pain. Tramadol is not being prescribed on an ongoing basis. Unfortunately, pain has become part of me. I hate it though.

I have tried other meds but did not respond well on some. I do use pain creams. Don't take Tylenol and frankly it does little for the pain.

I hope you can find something to lesson your symptoms. You are still young but many illnesses have no age barriers.

Loring

Osteoarthritis in Multiple Joints, Fibromyalgia, CRPS, Neuralgia, Chronic Daily Headaches, I.B., Hard of Hearing...

Post Edited (Loring) : 6/22/2015 11:32:24 AM (GMT-6)

Posted 6/23/2015 2:38 AM (GMT 0)
With fibro, most of us do need some medications.

I am sensitive to meds, so cannot tolerate enough meds to just wipe out pain..so i use meds for help .cannot function without an anti inflammatory..it is often said that fibro is not an inflammatory disease..however my manual therapist says it is inflammation in the nerves that does not show up in the bloodwork..i believe this based on my own responses...

I do use low dose tramadol..meaning i take 1/4 at a time..it keeps the edge off of the pain.. And i use topical pain relievers for my worse areas...low back mostly..

We use heat!

I use an accupressure mat , which also helps with sleep..

When a storm is coming i use micro-current therapy

I take vitamins, my d was low and getting it up ,
really helped a lot..

I did not want to increase my anti-inflammatory, so my doc had me up my omega three s..and i added tumeric

We go through a lot of trial and error to find what helps us the most.
Posted 6/23/2015 3:13 AM (GMT 0)

Myself 09 said...
Welcome. I am sure others will come along who promote a more natural approach. I take supplements, but also medication. I also exercise and eat relatively healthily. I use mindfulness as well. I prefer to manage the condition so that I can still participate in my life, rather than have my health be the constant definer of me.

Here is my thought on natural--and nothing more than my own perception. Humans have changed radically. So have our lives. Between pollution, tainted water, modern electronics, lack of exercise, living arrangements, families, the changes of our landscapes, I think that the effects of natural products are perhaps a bit too hopeful a response to a condition that modern life aggravates.

Everyone must make their own choice as how best to approach this. Our lives are so radically different from one another, as well as unfathomable from people even 100 years ago, that we as patients must develop our own best fit.

Great, great answer Myself-09. I've tried natural and non-natural meds, and a combination of them works the best for me at this point. Yes, it's great to think there is something natural that will fix us. However, given most aspects of our lives no longer resemble anything "natural" at all, how can we expect such a minor change in our lives to make much of a difference? Stop watching TV, walk five miles each day, eat like they did decades ago, get to within 5% of your healthy weight, eliminate all negative aspects of your life, etc. if you really want to be "natural" again...

Bottom line, do whatever is required to manage the best you can in this very difficult situation.

And BTW, Cymbalta isn't like the other SSRIs. It worked for me pretty well but Lyrica does better.

Three difficult years now with my fibro and I'm finally coming out the other side... As they say, when you're in hell, keep moving, you'll get through it...
Posted 6/23/2015 10:55 AM (GMT 0)
I definitely start out with the natural approach, including exercise, work, then rest, supplements, and recently started on valerian with passionflower, chamomile, and hops (the product is called "Calm Tabs" from Puritan's Pride). I've found just a couple tablets give me a nice, restful sleep, with no leftover negative effects the next morning.

When things are worse, I resort to meds (Flexeril or Neurontin (gabapentin)). I strongly dislike taking them, but when I hit a bad flare, they certainly take the worst edge off. As I've mentioned here before, my doctor prescribes the lowest dosage, which is a huge plus (less of the negative side effects) and has also given the okay to take as needed, rather than regularly, which is (I think) the norm, so you might want to check with your doctor if you decide to go that route. I'm so thankful he's done that, because when I first took them, I had to take them regularly, and the side effects had me in a constant fog!

Prayer and spiritual reading have helped me a lot, too. They both quiet my mind and concerns and I can better focus on what I need to do. I think things like crafts and pets are important also, and they can divert our minds from the ongoing fibro struggle.

Yes, I'd say do as much natural as possible and get your body used to that. If you then continue with lots of pain, you could ask your doctor about meds.

This morning I woke up after a really good night's sleep, after taking 2 Calm Tabs an hour before bedtime last night. No pain or stiffness, and I feel like it's "really" morning, and I'm ready for the day. :-)
Posted 6/23/2015 2:25 PM (GMT 0)
I was taking a bike ride a few weeks ago, in 'nature.' I started thinking that this, nice as it is, was not really nature. Where I live has been lived on and in for 400 years and more. People have moved land and water, blown up rocks, cut down trees, dug canals,etc. The house I live in has a stream buried underneath, because the builders who developed this area two hundred years ago wanted to sell the land. We have farms and warehouses and factories and highways,etc.

I am eating some greek yogurt I made myself with some nuts and some truvia. Where did the milk come from? The almonds? The plastic they were packaged in? What about the truvia--yes, it's stevia, and that is a plant,but.... it is processed.

I don't like to set up the natural as opposed to the unnatural, because I think that is a misleading dichotomy. But, I think that natural, at least in this place and time, is something that is not easily attainable. "Not from nature," or man-made, has benefits that natural does not, having been devised as an aid or a solution for human and her problems. Yes,some unnatural things are not helpful to our health, but they were developed for reasons other than health. Nuclear power was originally developed as a weapon, this is the obvious example.

I digress. Each person must decide how their illness is best managed to fit their lifestyle and choices. For some that is natural,and trying whatever they can from the reams of knowledge on historically defined or culturally observed therapies.

My sister, (DX with Fibro in the early 90s) who was a firm believer in nature providing some solutions, was also a pragmatist. She saw a naturopath who was also a medical doctor. Her massage therapist was also medically trained. She had a vast assortment of different tinctures and vials and pills and powders for different ailments. She also knew when to say, okay, this isn't good enough, and try something man-made. She took lyrica and tramadol, and had ambien for nights when melatonin wasn't cutting it.

To my way of thinking,an open mind when researching possible treatments is a more beneficial way of make choices than are set terminology.

Cymbalta for me, BTW, was not effective. It didn't help the pain, and caused horrid side effects.
Posted 6/23/2015 4:24 PM (GMT 0)
Sorry I didn't post earlier. Having one of those weeks where the mechanics of posting sometimes feels so complicated (LOL).

Before I ever thought much about the CRPS and Fibro issue, I had started to get perimenopause. My moods were all over the place and I felt very unsettled. Having had a parent who moderated their mood with meds and a parent who was an alcoholic, I am leery about anything that is prescription for my mood. I may have to get over that thought, but .... it's how I got to where I am with supplements now.

There is a site called "women to women". It's female doctors/nurse practitioners who talk to women about health issues from the point of view of what we deal with. I am not in love with the site, but I did find some good information there. I started to figure out that I was having Serotonin issues. Once I figured that out, the site led me to a post by a doctor of supplements that assist with mood and cognitive issues caused by menopause. As my Massage therapist says, it's all related.

I am working with another of a series of doctors. He had me change some meds. In my typical fashion, I put aside the supplement bottles to figure it out on a day that I had a brain and forgot it. Accordingly, within a week or two my moods were all over the place. I was angry a lot. It didn't help that I was dealing with a bunch of things. So we made an effort to get all my supplements back and I am back to my normal self.

In case this would be helpful to you, here is what I take with a note of what I take it for in the format of "Pill name(Notes), #, Focus for taking". In the case of the two compounds, I include the ingredients of them. I get all of my vitamins on Amazon and shop them to keep my price/day as low as possible. My disclaimer is that this is what worked for me after painstaking years spent figuring out what I need. It may not be what you need, but hopefully with the info I provided it might give you some ideas.

Calcium Magnesium Zinc (Osteo prevention), 2, Fibro/Osteo in Family

Super B-complex (assists in maintaining energy levels), 2, Fibromyalgia

Vitamin D3 5000IU (helps body absorb calcium, increase coordination), 1, Fibromyalgia

D-Ribose 1000mg (boosts muscle energy, prevent muscle cramp), 1, Fibromyalgia

Magnesium Malate (prevent fatigue, lower blood pressure), 2, Fibromyalgia

Gotu Kola (Mental function, circulation, scar prevention), 2, Cognitive

Kirkland Vitamin C w/rose hips and Citrus 1000mg (Prevent cognitive deterioration and energy loss - particulary post-mono), 1, Cognitive

L- Tyrosine 500 mg, 1, Mood Support

5-HTP 100mg, 1, Mood Support

Dopa Mucuna 15% LDOPA 400mg, 1, Mood Support

True Focus (MORNING), 1, Mood /Cognitive
(Vitamin C (from Potassium Ascorbate), Vitamin B6 (from Pyridoxine HCl), Potassium (from Potassium Ascorbate), L-Tyrosine (Free-Form), L-Phenylalanine (Free-Form), Taurine (Free-Form), Grapeseed (Vitis vinifera) Extract (min. 90% Total Polyphenols), Potassium Ascorbate, DMAE (from Dimethylaminoethanol Bitartrate), Ginkgo biloba (Leaf) Extract (min. 24% Ginkgoflavonglycosides & min. 6% Terpene Lactones), CoQ10 (Coenzyme Q10) (as Ubidecarenone)

True Calm (BEDTIME), 1, Mood /Cognitive
(Niacin (as Niacinamide), Vitamin B6 (from Pyridoxine Hydrochloride), Magnesium (from Magnesium Amino Acid Chelate), GABA (Gamma Aminobutyric Acid), Glycine, Taurine, Inositol, Valerian (Valeriana Officinalis) (root)
Posted 6/26/2015 4:08 AM (GMT 0)
It really is a personal journey with personalities lifestyles and what our system responds to. There are natural things that help me and medical/allopathic things. There is a constant journaling, in actual written or computer format, and later through years of creating this awareness of triggers; good and bad. There is meditation and breathing, excercise, trigger point, acupuntuncure and more.
I know so many with fibro and each one of us seems to respond differently to all of this. No magic bullet here.
I firmly believe that we can find a wellness plan that is best for us. I know that it took me years of trial and error and, I am still learning. Just recently I bought Arnica gel for my knee after surgery. Wow! It really helps my upper body pain too.
I had surgery three and a half months ago. It set off a long flare, in fact, it is just starting to subside. I do have a new normal in terms of pain levels so I am starting my new wellness plan. It was maddening at first but now it's just life.
Hope you find what helps you
Blessings
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