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Dear Dr. Mark Pellegrino
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An_245552 posted:
hi Dr. Mark Pellegrino& friends,

My FMS was triggered again esp. for several weeks in the last 2 months,
sometimes I can't go out. I found I'm tired to explain about FMS people around
me since you know we don't look sick. I got FMS for 13 years,since I was 19. I
studid & work on patient advocacy (on other common chronic disease) before but I
can do nearly nothing on myself!! In the bottom of my heart I want to get enough
support from others & the society, like what I did on my patients before. I feel
so hard to let people understand me since very few people are diagnosed with FMS
in Hong Kong, I have difficulty to face friends & relatives since they think I'm
too easy to give-up a job.

Hong Kong people still concern very little about FMS after a decade. How's your
social life, friends? Soemtimes I think should I leave Hong Kong but I don't
know where to go or what to do in overseas.

I got difficulty for my job development despite I completed post-grad study.

I choose alternative medicine instead of western conventional medicine since I'm so sensitive & feel nausea even just take Acoxia .

Well, in Hong Kong, i feel walk alone on FMS.
I really wish all of us can be well & joyful.

love,
Jane
from Hong Kong
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Caprice_WebMD_Staff responded:
Hi Jane,

At least here you're not alone. (((softhugs))) I hope that talking here will help.
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
 
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Mark Pellegrino, MD responded:
Hi Jane,

Sorry to hear of your difficulties and loneliness with fibromyalgia in Hong Hong. Even though you feel fewer people are being diagnosed with fibromyalgia in Hong Kong compared with elsewhere, there are many people who have it even if they have not yet been officially diagnosed.

Every population study ever done with fibromyalgia shows that this condition is present in 2-5% of the population regardless of race or background. So you are really not as alone as you may think! Chances are someone you know well, or even a family member, also suffers from fibromyalgia. If you can discover others who share your experiences, you may be able to help each other cope better with this condition.

Even if you left Hong Kong, your fibromyalgia would still come with you and would still cause symptoms as it does in Hong Kong. We haven't found any cure yet in the States, or anywhere, for fibromyalgia. The best treatment we have is educating ourselves about this condition and figuring out how to manage it as best we can.

Sure it's important to have a doctor who understands your condition and can help you try different treatments to see what may work best for you. Many people with fibromyalgia are sensitive to medicines including anti-inflammatories (Acoxia is a Cox 2 type NSAID not available in the States) Many people with fibromyalgia do not respond to NSAID meds since fibro is not a true inflammation. And often, alternative treatments work best.

I'm hopeful you will be able to find a support system that includes a knowledgable doctor and a few people close to you who understand what you are going through. You are the one, though, who will keep striving to understand all you can about fibromyalgia, keep looking for things that work, and learn to live your life fully and happily in Hong Kong even if you happen to have fibromyalgia.

Remember you are not alone. This is a great site to reach out across the world and share and learn from others who know exactly how you feel.

Dr. P
 
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An_245593 replied to Mark Pellegrino, MD's response:
I am currently seeing a Pain Mgmnt Specialist whom has put me in the past on Cymbalta which made me gain a significant amount of weight so a year or so ago I was switched to Savella and recentlay it has been making me sick to my stomach when I take it.....if I don't take it I suffer from it.

My symptoms have been getting worse over time and the concentration/focusing has been the worse....I failed out of my Nursing program because of the issues. The headaches and overall pain are getting worse as time goes on and I am only 34! I am in desperate need of HELP!
 
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Sparkles65 replied to Mark Pellegrino, MD's response:
Hello I have a friend who truely belives that your unable to work at all. But I see here your an M.D. and working. Are there levels of Fibromyalgia?
 
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An_245610 replied to Mark Pellegrino, MD's response:
Hello Dr. P (and Jane)
I agree but I as well am suffering chronically and jusst have two points I need to get across here and hope you can give me some advice. I have had this for about 27 yrs, and I have tried so many things that either didn't work or worked for a little while. As of right now I am using Lyrica, Tramadol and Hydrocodone. As anyone might agree I get looks and comments about my pain meds as though I am abusive toward them so I just started doing what works even if it isn't the "right" thing in everyone elses eyes. So on that note let me ask about marijuana. Not because I am one of those potheads or anything but my concentration is shot. My memory is shot. So many years either in pain or taking medication has had its toll on me with no real options for me except be in pain or risk more memory issues, etc. So what do you think about the potential for using it for this? I have tried it. Let me tell you, from a Christian woman who wants nothing more than to please my Maker, it helps me. I feel the relaxation when I exhale. My nerves stop yelling at me from all different directions and I actually can concentrate on one thing and finish projects. Without it I suffer terribly. One more time I am not a pothead and do not smoke it habitually. I do relax on it though and I have not found anything else that can knock out the screams of pain and help me to just do the simple task of relaxing in order to bring relief, and relax in order to concentrate on what task I have. So another note....I have gone to Hong Kong a few times and I will just add something in there she forgot to mention or doesn't realize, I hurt when I was there increasingly because of the humidity. It is rainy and damp more than here. I also haven't held down a job for long so I had to get involved in other ways. Maybe make soaps or some kind of business you can do from home on your good days. I personally won't be productive an ounce if I haven't gotten up early. In the morning I am energetic because my back has been rested. By evening I am in pain and ready to rest my back, try an early, early job. The most work in before you find your pain building. In my house if it isn't done before noon I probably am not able to do it so 6am-noon I get all that I can done. It helps so much to learn your weaknesses and work around them Jane. You know you. Diary your pain levels for a week and see when and where you can thrive. I also live in North Carolina and San Francisco. It gets a bit damp in SF in seasons so I have to go to NC. During the winter I go to SF. Home based business works Jane because we can't live by the rules of a world that can't understand what they can not see. Ive tried for almost three decades. I actually was treated as though I were a hypochondriac for the better part of my adulthood and even as though I was/am crazy or lazy. But Im not. I am strong and can do more than most healthy people. Not because I don't hurt but because I can't let this hold me down. I need a life worth living, not in hiding in shame.
 
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janejanehk replied to An_245593's response:
hi, we are so similer, i failed fr my Prothetist/ Orthotist training because of the FMS 10 years ago, luckily I still got a degree & a Health Education diploma. I'm 32 & suffered fr it for 13 years!! Let's walk & face together!!
 
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janejanehk replied to An_245610's response:
I'm grateful to have your prompt support & reply. Yes, many things works on me but just for some while. These 2-3 weeks, raw veggie diet & sleep without mattress works on me but always not sure if this can keep on........
 
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janejanehk replied to Mark Pellegrino, MD's response:
I'm grateful to have your prompt support & reply, & also fr many friends. It's really an excellent group. Yr suggestion is so useful. I'm not walking alone & it's hard to compare & if it's good for an FMS patient to live in HK or not, you're extremely correct!
 
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janejanehk replied to Caprice_WebMD_Staff's response:
thanks to youre hug & support!! it's really a great group!
 
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Fibroreality replied to Mark Pellegrino, MD's response:
Jane,

I recently sought out counseling because of my fibromyalgia and depression. I am a licensed counselor myself and recognized that I needed someone to talk to about my condition and the impact that it has had on my life. Maybe you could see a counselor in Hong Kong so that you would have someone to talk to. I agree with Dr. Pllegrino about NSAID medication. I am always given those and they do absolutely nothing!!!!! Continue to use this website as a source of support as well because we all understand what you are going through.
 
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janejanehk replied to Fibroreality's response:
Sorry for the very late reply. my condition is improving.I' ve just start trying on a new Chi Kung, I've heard that many heard recovered from their chronic disease miracally. Let me see my progress and tell you all more, this teacher also hold courses in US.

God bless,
Jane
 
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gabuschka replied to janejanehk's response:
Hi Jane, please let us know if Chi Kung works for you. I really hope it makes you feel better! Best wishes.
 
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fitzgift responded:
Hi Jane even here in Calif. people don't understand fibro so your not alone this is a good website so we can talk to each other. I too do alternative meds . I have had this fibro for over 25 yrs and I have found to function it is a guessing game as to what will help today. I use 5HTP at night ,calcium,magnesium,potassium at night to sleep this works for me. I have the tingling,numbness burny sensation in my hands and feet so I use a homeopathic called NerveFix from Vitacost look it up on the internet for the nerves this really helps and Ultram or tramadol for the pain, Vicodan when a flare up comes, hot water or ice so it is all a guessing game according to the way you feel . hope some of this helps and also low impact aerobics as well as Tai Chi. fitzgift
 
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janejanehk replied to gabuschka's response:
Dear Gabuschka,

Yes, i feel better after trying the Chi Kung for two weeks. Accompany with swimming, especially FMS pain of my limbs are much better after swimming at beach, the therapeutic effect of swmming at beach is much better than at swimming pools but in turn, the forces of the sea waves affect my head, make me feel dizzy so much. Most probably, the neck muscle & the ear affects each other mutually, and causing so much dizziness. I will consult my accupuncturist again on Monday, and see if my assumption is true. I feel so tired at my heart, one problem comes after the other.

The Chi Kung may make my dizziness more severe and so that I've stopped for these 3 days. I've heard that this kind of Chi Kung make petients imrpove miraculously, imcluding R.A. & heart disease. Well, i think I need 2-3 months to observe.

I know the teacher holds courses in USA. Are you friends living in US? Maybe if i really feel better from this Chi Kung, I ask the teacher for his course venues in US for you all.

blessing,
Jane


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