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Fibromyalgia
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Posted 6/30/2011 10:12 AM (GMT 0)
Hi all.
I have suffered from Fibromyalgia since 1996 and suffer everyday with pain everywhere apart from my elbows.
I have not worked for 15 years and the doctors here in the UK have said to just get on with it as there is nothing they can do.
I have had Physiotherapy and Hydrotherapy but neither worked,and my doctor says there is no point seeing a reumatologist as they wont be able to do anything.
My Doctor does agree that America are about 10 years ahead regarding research and treatment but not working I have never had the funds to go and fing out for myself.

Yesterday my brother offered to pay for me to travel to America for treatment. I know I will not be cured but even a 5% reduction in suffering I believe would be an amazing acheivement.

Does anybody in these forums believe that I could be helped a little or is it just a pipe dream thinking someone out there could help.
Or if I dont go will I always be thinking "what if"
Posted 6/30/2011 2:28 PM (GMT 0)
Hi woody

Europe has a drug that we don't have here yet. Several studies have shown promising results for relief of pain and at timmes fatigue also. It's been in europe for 25 years. It is called flupirtine-non opiate non addictive.

I really would not waste the trip here, they can't really do much-it's kind of up to us, since the docs have absolutely not a clue about fibro. Ask your doc about flupirtine....I am really excited by research but we've heard that before-lol

Take care

Maggie
Posted 6/30/2011 3:16 PM (GMT 0)
I'm not so sure coming here would help. Doctors might not want 2 treat someone that's come from out
of the country.I've lived here all my life & even I can't get the doctors here 2 give me any help.Not trying
2 b a downer but u need 2 know what u might run into when u get here.Not every state has doctors who r
willing 2 help.One poster told me that Florida is really good about giving Fibros help.Go back into our forum
and ask. welcome!
Posted 6/30/2011 3:42 PM (GMT 0)
Hi, Woody, and welcome!  I'm so glad you found us and joined in.  I know  your doctor said don't bother to see a rheumatologist, but I sure would.  Many on this forum use a rheumy for their fibro.  They are  more of a specialist and will run tests to rule out other illnesses that have many of the same symptoms as fibro...things like Lyme disease and Lupus.  Once that is done, then a diagnosis of fibro is usually given.  Some have fibro and something else.  But, there are things they can do for these other illnesses so if you have something different or something else besides fibro, you can get some relief. 

 

The only things we are doing over here lately is offering Cymbalta, Lyrica, Savella, and narcotic pain medication for the most part.  The doctors are studying hard and learning more and more every day but they still aren't positive what is causing fibro.  So, I don't think coming to the US is going to help a lot. 

 

I use ibuprofen with food, extra strength Tylenol, malic acid/magnesium supplements and vitamin D3 supplements to help with pain and fatigue.  Along with this, I do gentle stretching exercises, gentle daily exercise (I walk and swim), and gentle massages.  I also pace myself.  All this combined keeps me in control of the pain.

 

Be sure to read Fibro 101...the second thread on the forum.  There are links to good info about fibro and you will learn a lot there.  Be sure to check out the links What Else Could It Be, and the links about malic acid/magnesium and vitamin D.  Many have gotten help with these vitamins and supplements.

 

I'm looking forward to getting to know you better.  Be sure to read posts because there is a lot of info in them.  Don't hesitate to ask questions because we are here to help you.  I hope to hear more from you soon.

 

Sherrine

Posted 6/30/2011 4:51 PM (GMT 0)
Hi Woody and welcome! Your brother is a very generous person to offer to fund a trip for you. Thank goodness for family!

I have to say that I think your doctor has not been particularly helpful to you. I'm not sure why they have such an attitude about rheumotologists either. The latter is the physician that treats Fibromyalgia (FMS) over the pond here in the USA.

I think that you deserve better medical treatment than you have been getting no thanks to your current physician. I'm really not sure that anything can be gained by coming here. We have to be our own best advocates when it comes to managing this syndrome. That usually means firing a few doctors along the way in order to find the right type of medical care that is needed. There is no cure for Fibromyalgia but it can be managed with certain classes of prescribed medication.

Have you tried the medication "Milnacipran?" It has been available in Europe for decades. It is new to us and called "Savella" here. I also think that flupirtine is another option. Flupirtine has been available in Europe since 1984. It is not available here in the USA but the studies in regards to Fibromyalgia look promising.

Are you on any sleep medication? Fibromyalgia interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. You should be on Amitriptyline (also known as Endep, Elavil or Vanatrip) or something else to insure some level of proper sleep. This is a crucial part of treatment.

I use a mix of conventional and holistic medicine to manage my symptoms. Have you considered seeing a naturopathic physician? There is an excellent school in London - College of Naturopathic Medicine that may be helpful to you. One of my doctors attended that school and she was very helpful in sorting out some issues that my regular doctors completely missed.

How is your diet? Deep fried foods, lunchmeat, bacon and red wine are all things that will make your pain levels worse. You should avoid any food item that contains nitrates. Also, anything that contains an artifical sweetner will probably also impact your pain levels. If you need a sweetner for tea/coffee use something made from the nontoxic Stevia plant. You should be able to find it locally at a healthfood store or order some online.

Have you tried using Google to see what options are available for Fibromyalgia treatment in your area? I.E. "London fibromyalgia" and see what pops up.

Order a book called "Fibromyalgia for Dummies." It contains good basic information about this syndrome and how to manage it. My feeling is that you have an information deficit in terms of managing FMS.

And finally, if I was going to come here for treatment, I would chose the Whitaker Wellness Institute in Newport, California (they are online) or a Mayo Clinic in that order. I have no affiliation wih either clinic. My pipe dream would be Whitaker.

Good luck to you in whatever you decide and keep in touch.
Posted 6/30/2011 8:45 PM (GMT 0)
Woody - I forgot a couple of important points in my last post.

Have you been tested for a Vitamin D deficiency? This is done using bloodwork.

How about gluten intolerance? The most accurate test is done using a stool sample. An intestional biopsy may miss the damaged vilii in your gut. And, bloodwork has a 10% chance of giving a false negative. Either of these problems will also cause widespread pain.

If your doctor is not prescribing anything other than hydro and physiotherapy it is time for a change. Particularly if they they have not done these particular tests or tried any of the medication available to manage your symptoms. Your treatment regimen should be constantly evolving until you find a combination that works for you. Take care - you are not alone.
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