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Fibromyalgia

lightning05

Well-Known Member
#1
Does anyone have Fibromyalgia and feel comfortable talking with me about it? I'm not officially diagnosed, but I have been doing a lot of research and journaling my symptoms for a few months and believe I may have it. I'd just like some advice/insight if possible. We can PM or talk on here. Thanks in advance.
 

Ash600

Meetup star
SF Creative
SF Supporter
#2
Consider this.

<mod edit - guidelines>

Just to point out, that product contains the ingredient feverfew. It isn't recommended for those under 18yrs, or for those who are pregnant or breastfeeding. Additionally, for those patients who are taking any meds that affect bleeding and blodd clotting, this can possibly increase the risk of bleeding. Examples of meds are : NSAIDS such as Naproxen or Ibuprofen, Aspirin, which for those suffering from fibromylagia may already be taking. Other meds affected are antiplatelet drugs eg Clopidrogel, anticoagulants ef warfarin, apixaban, rivaroxaban. This can also increase BP, heart rate, and potentially tigger Raynaud's phenomenon.
Therefore those with any pre-exisiting cardio-vascular or peripheral vascular conditions, I would excercise caution and take professional advice before thinking about using this.

Goes without saying, I'd take professional advice before taking any suggested products if anyone has any co-morbidities or are taking any current medication(s).
 
Last edited by a moderator:
#3
Yes, that's why I rely on my doctor not the internet to make sure any "supplements" are in line with treatments.

I have a healthcare degree.

K
 

lightning05

Well-Known Member
#7
@Ash600 are you diagnosed with it or have someone close to you who is? I just want to see how my experience compares because I know there's not a "test" for it.
 
#8
Sorry that you're going through this

There's a book called "Curing Fibromyalgia Naturally with Chinese Medicine" by Bob Flaws, Blue Poppy Press.

I haven't read that particular title, but another in the series on depression.

Might be worth checking out.
 

Ash600

Meetup star
SF Creative
SF Supporter
#9
@Ash600 are you diagnosed with it or have someone close to you who is? I just want to see how my experience compares because I know there's not a "test" for it.
No @lightning05 , I don't suffer from it or have anyone close who has it. I work in healthcare and have dealt with over the years with a few patients suffering from this.

You're right, there's no specific test so diagnosis can be difficult. According to a research article, it can take an average of two years for the condition to be diagnosed. However, it really depends on the comptency of the consultants. The symptoms can vary and are often associated with other conditions, adding to the difficulty of an accurate diagnosis.
However, certain criteria need to be met before a diagnosis can be made:
• severe pain in three to six different areas of the body, or milder pain in seven or more different areas
• symptoms have been present at a similar level for at least three months
• no other reason has been found for the symptoms.
Doctors will perform tests to rule out other conditions before confirming a diagnosis of fibromyalgia.

In terms of treatment, it's usually a multidisclipinary approach, based on pharmacological and non-pharmacological treatment. As symptoms will vary from individual, not everyone will have the same treatment, but will or should be, tailor-made to the person. There's various treatment options avialable, so it might be trial and error trying to find the right combination suitable for you.

I'll leave it at that for the moment as I don't want to overload you, but give us a tap if there's anything I could help with.
 

bobbob

SF Supporter
#10
Just to point out, that product contains the ingredient feverfew. It's recommended for those under 18yrs, or for those who are pregnant or breastfeeding. Additionally, for those patients who are taking any meds that affect bleeding and blodd clotting, this can possibly increase the risk of bleeding. Examples of meds are : NSAIDS such as Naproxen or Ibuprofen, Aspirin, which for those suffering from fibromylagia may already be taking. Other meds affected are antiplatelet drugs eg Clopidrogel, anticoagulants ef warfarin, apixaban, rivaroxaban. This can also increase BP, heart rate, and potentially tigger Raynaud's phenomenon.
Therefore those with any pre-exisiting cardio-vascular or peripheral vascular conditions, I would excercise caution and take professional advice before thinking about using this.

Goes without saying, I'd take professional advice before taking any suggested products if anyone has any co-morbidities or are taking any current medication(s).
I think u mean that its NOT recommended for those groups?
 

justrob

Keep on keeping on.
#11
My 2 cents. I was diagnosed and treated for fibromyalgia. I no longer have symptoms, the only thing I take now is Vit. D as my Dr. Diagnosed me with a Vit. D difficency. Please keep in mind I always kept my primary care physician (PCP) infomed of my suppliments, if I did not get his approval first. As noted above some supplements can have negative interactions with meds.

My fibromalgia exhibited as hurtung muscles and joint pain. Sometimes all my joints hurt at once for up to 3 months.

What helped me sleep, and got rid of nightmares I had for decades was 5-htp before bed. It increases seratonin, and can cause a very serious condition know as serotinin syndrone if taken with anti-depressents, please check with your doctor. I no longer need it.

I self administered bee sting therapy for a while and it was beneficial.

What mitigated all the symptoms for me was a perscription for Savella. I believe fibromyalgia is neurological and not muscular/skeletal. I believe that for me, my main problem is proper modulation of norepinephorine (noradrenaline). This is a stress hormone, and I beleive it was out of whack for most of my adult life because I lived in constant fear and anxiety. Savella increases norepinepherine.

After my severe depression, I got better. All phobias disappeared. I no longer need perscription meds. I had a moment of radical acceptance, I no longer live in the past or the future, those three things are needed for good mental health. So now I need Vit. D, if I don't take it my mood can go down. Vit D is needed for norepinephorine production among other things. I also need plenty of water, 9-12 glasses (including coffee, tea, soups, etc), a day. If I get a little dehydrated I can experience slight joint pain and lethargy. I also have to stay at 185pds or lower so I don't experience lethargy.

I am just giving you my experience. This is not to diagnose any specific problem or deficiency for you. Just that fibromyalgia is neurological (without stating specific chemical pathways), and that may be why it is often comorbid with mental illness. My doctor did tell me he had success with prescribing Savella to other fibro patients. My doctor also monitors my Vit. D. levels, which is neccesary, because high levels on the blood for a long time can lead to peripheral neuropathy.

I told you what works for me. It took a long time to get here. To get the right diet, exercise, and mental attitude. I got better at 47, my problems started when I was a teen. I'm 50 now. I didn't notice right away when I felt normal, just one day I realize that I hadn't been in pain for a while. There is no euphoria with my treatments, just my mood is normal and no pain.

One last thing I work with and trust my doctors. I am very smart, but my success rate at self diagnosis is about 20%, whereas my doctor's diagnosis rate is about 80%.
 

lightning05

Well-Known Member
#13
@Ash600 and @justrob thank you very much for your replies. I really appreciate you taking the time to answer this thread in such detail. Coupled with what I have read it has helped in many ways to hear your experiences and I agree, I am not trying to self diagnose. I actually stumbled upon the realization that I may have it with a conversation with my boyfriend while we looked at back massagers lol. I am in the process of getting health insurance again, so for now I am just journaling my symptoms so I can show my doctor. He's usually pretty thorough about things so I trust if I go to him with enough he may look into it more.
 

Ash600

Meetup star
SF Creative
SF Supporter
#14
That's a good idea, journalling your symptoms as that can help greatly with the diagnosis. Also, maybe put down any triggers which may have caused the symptoms to come on, eg types of food, activity, how you were feeling etc as that could help as well.
 

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