New to the forum?

Sign Up Here!


Already a member?
Please login below.





Forgot your password?
Need Help?  
Regarding Recovery & Cure From Fibromyaliga
10 Replies
DanNeuffer - October 24

Hello Everyone

Nicole asked me to post in response to people's thoughts on the recent article in the newsletter:

2 + 1 Key Qualities for Recovery from Fibromyalgia, ME/CFS and MCS

Apparently some people were upset and had concerns that there is no "CURE" for Fibromyalgia. But what people don't realise is that you don't need a "CURE" to get your health and life back - you just need to recover!

It might sound confusing, or you might think it is just a sill play on words, but actually it's critical to understand to move forward and makes much better sense once you understand how the illness works and perpetuates. Below I transpose most of a recent blog post to clarify what I mean - I hope you all find it helpful!



The Ugly Truth about Looking for a Cure for Fibromyalgia and a Cure for ME/CFS that few dare to admit! - Cure, Remission, Recovery – Not Just a Play on Words!


There is much information out there on how to diagnose Fibromyalgia Syndrome (FMS) or Chronic Fatigue Syndrome (CFS) (also described as Myalgic Encephalomyelitis or ME). And whilst a diagnosis can be elusive for many people suffering with this illness, there is certainly no doubt for them that they are ill, even if their doctors, family or friends don’t always share this certainty.

But there is little talk about how to identify if you have recovered from Fibromyalgia or ME/CFS. Perhaps because so many people including doctors will simply make the assertion that recovery isn’t possible, a negative belief shared by many long-term sufferers of the illness. (admittedly, I was one of these!)

Well having recovered myself after 6 years of illness and having spoken to people that recovered after decades of illness, I no longer share this belief. Of course, not everyone is easily convinced by hearing recovery stories, and with good reason! Because,

Many so-called “Recoveries” are little more than symptom suppression and management!

People often hear the word recovery and quickly say

“There is no cure for ME/CFS and there is no cure for Fibromyalgia”

So what is a cure for fibromyalgia or ME/CFS? What is remission or relapse? And what is an accidental recovery as I describe it?

People will have different definitions and different views, so here are some definitions that Wikipedia currently offers:

A cure is the end of a medical condition; the substance or procedure that ends the medical condition, such as a medication, a surgical operation, a change in lifestyle, or even a philosophical mindset that helps end a person’s sufferings. It may also refer to the state of being healed, or cured.The Ugly Truth about Looking for a Cure for Fibromyalgia and a Cure for ME/CFS that few dare to admit!

A remission is a temporary end to the medical signs and symptoms of an incurable disease. A disease is said to be incurable if there is always a chance of the patient relapsing, no matter how long the patient has been in remission.

So cure is an “end” of a medical condition which implies that there is no chance of the patient relapsing.

In my mind, the word cure also suggests a guaranteed positive result as well as a single treatment that works for all people. This is why I am not comfortable with this word for Fibromyalgia and Chronic Fatigue Syndrome or ME.

But when I think about, are there really ANY conditions that have a cure under that definition? Cancer, heart disease, depression, MS, ALD, AIDS, Diabetes, the list is nearly endless. None came to mind for me, so perhaps the word cure is a misnomer. Even for simpler things that such as bacterial infections where effective antibiotics exist – does it guarantee that the infection will not come back or that re-infection will not occur again?

So given that nobody knows of a “cure for Fibromyalgia and Chronic Fatigue Syndrome” that works the same for everyone, perhaps the words remission is more appropriate. However, the word ‘temporary’ in the definition is obviously very negative and not necessarily correct. Because of course there is no guarantee that a relapse will occur, so how can we call it temporary?

My preference is for the word recovery.

So what do I mean by recovery? A recovery is a restoration of health or functioning according to Wikipedia. So we are talking about being asymptomatic – sounds pretty good right? Better than cure in fact because even if you are ‘cured’, doesn’t mean that you have a restoration of your health.

And a recovery can be full or partial.

But how do you measure it?

In the end, no matter what you say, it is going to be somewhat subjective. And in that lies the power of the sceptic.

Don’t get me wrong, I have no problems with sceptics. I am sceptical myself, pathologically so in my later years of suffering with ME/CFS and Fibromyalgia. Frankly, I think it is perfectly reasonable to be sceptical and I think most of us who have had the illness have earned that right through countless trials and tribulations. But the questions is; Does this scepticism serve us?

I think it depends on how far we take it. Given that there are way too many claims of treatments or explanations for our symptoms that frankly either lead nowhere, or provide temporary covering up of symptoms only, a healthy dose of scepticism makes sense. And anyone who has gone through what seems like a never-ending bleeding wallet for tests, treatments and empty promises, all whilst having a very limited income due to their inability to work, has to find some way of dealing with things.

But it can go too far. Way too far! And when people make a full recovery and people say that they hence never had the illness or had something else, that is too far in my view. There is no scientific basis for such claims.

I think most of us find it offensive that given that we have to ‘prove’ our invisible illness with the medical community for so many decades and have been labelled as depressed or hypochondriacs, that finally now when people at least recognise it as a real physical illness, that some within our own ranks would stoop to accusing each other of never having had the illness, just because they got well again.

But I do agree that people often haven’t actually recovered when they claim they have!


SO WHAT IS RECOVERY FROM FIBROMYALGIA/ME/CFS?

In previous blogs, I have summarised some the main symptoms of ME/CFS/FMS. Some people have lots of various symptoms and some people have few. Clearly many of us find it to be an ever-increasing list over the years and we often see how Fibromyalgia pain and Multiple Chemical Sensitivities get added to the collection of symptoms of ME/CFS.

But if you cover up your symptoms using a range of medications, hormones and supplements that reduces your symptoms to something resembling normal – is that recovery?

Not in my mind.

For instance, let’s look at obesity. Regardless of whether you agree with the American Medical Association classifying it as a disease, is dressing in a corset covered my flowing black clothing which all makes you look slimmer a cure or a recovery. Clearly not!

I have come across people who tell me they are recovered and rattle of 20 supplements, regular IV infusions, hormone treatment and so on and then say that they can function fairly normally again. That is not a recovery, that is a chemistry experiment!

Or some people manage to reduce their symptoms by severely limiting their physical and mental activity. They avoid all stress, eat the “perfect diet” and stay strictly inside a very limited physical activity envelope. In fact many people do this over the years to manage their symptoms and limit the severe fibro flares or bouts of symptom exacerbation. Does anyone see this as recovery? Some people do, but not I.

To me, a recovery means that your body’s function is restored to allow it to cope with the normal activities associated with full-time work and an active lifestyle that includes doing social activities and exercise, as well as eating a normal diet (normal not meaning good!)

But being symptom free whilst maintaining a reasonable diet and reasonable lifestyle (you know, work rest and play) with a few supplements, surely can still be seen as a recovery. The question is about how much support and diet restriction exists and how much stress management or lifestyle limitation exists. But trying to quantify that is difficult and agree on an exact formula may be difficult.

Yet I would hope that we can all agree that getting your life back, being able to be symptom free and able to work full-time, enjoy all the normal social activities and reasonable exercise (perhaps not ultra-marathon running) all without relying on any medication has to be seen as worthwhile. Surely, regardless of whether we term it partial or full recovery, THAT has to be seen as FANTASTIC, right?

I wonder if sometimes we lose perspective of things when we have suffered with the illness for too long?

I remember when I recovered it became pretty clear that I stopped getting the bouts and my symptoms had reduced to a point where I thought they were gone. But whilst pain, fever, insomnia, gut dysfunction, brain fog and so many other symptoms are clearly identifiable, others are more difficult to quantify.

The two that come to mind are general malaise and energy. Even a year after I had fully recovered, I noticed that I felt more energetic and that my health felt more robust than before. So did I just become fully recovered now, or was I fully recovered 12 months earlier?

My view is that we just don’t have a reference of what is normal after so many years of illness. Besides that ‘normal’ for many people is far from being vibrantly healthy. When I came out of my ‘lost decade’, I suddenly was 10 years older, severely deconditioned with severe muscle loss and no cardio vascular fitness. What was I comparing to, the old self?

But then you keep wondering, how much better can it get. Well, average Joe next door that never had the illness could be asking the same question! What is their health like? Could they have more energy? Could they have a stronger immune system? Probably yes. But because they have been symptom free, they don’t constantly consider this and scrutinise this. In fact, let’s face it, most of us were that average Joe (or Jane) before we got ill.

So whilst a one-fit-all single treatment magic “cure” for ME/CFS and Fibromyalgia may not be available now or ever, I can say that recovery is definitely possible. Regardless of what some people say, if you look at the symptoms and experience of many people that are bold enough to claim recovery, you can clearly see that they really had ME/CFS/Fibromyalgia. But for some people, clearly no matter what is put before them, they will remain sceptical. It may feel like a safer place, oversceptical attitudes are a road to nowhere.

And whilst many people experience what I would call an accidental recovery (a recovery where they don’t know WHY they recovered), I believe that those that recover understanding WHY they got ill and WHY they recovered have a much stronger chance of never relapsing from their “remission”, as long as they continue to value and treasure their health and live a normal healthy lifestyle full with all the experiences that life has to offer.

In my mind recovery of health has to be about your body functioning well and giving you access to the experience of good health without being reliant on external powerful drugs or severe lifestyle restrictions. The ugly truth is that getting hung up on whether there is a cure for fibromyaliga or ME/CFS, or wether there isn’t, or whether recovery is possible or not, could waste years of your life needlessly. My message to everyone is to just focus on getting your health back.

I hope you see I am saying this coming from a loving place, and not to be harsh.

Best wishes,

Dan

:)

 

Deb1901 - November 1

That was written very well

 

axxie - November 1

Hi, I would like to give some my two cents, I have had MS/CFS for several years 2006 to be precise, it took me a few too many years to actually recover. You never cure it, but yes you can participate an active life with Fibro. The problem, is finding that you have fibro and a willing doctor who is ready and willing to help you. Too many doctor's feel that we are there to cry and wine and get pain pills. I have seen my fair share, I changed my tactic, I went to the doctors with a list of what my health problems were and gave the understanding to the doctor that I was a patient who needed help. Educate yourself on the power words such as describing pain. I promise you you will get far better understanding and treatment. Can you really shed fibro, I do not think so, but by changing your method of eating, dealing with stress and educating yourself and taking the power back, yes can live a good productive life. Go seek the help of chiropractors, and others who can help you and look at it as a multiple disciplinary people trying to help you. Good luck.

 

January - November 16

I managed to cure some of my pain by (1) going gluten free and (2) QUITTING all the fibro drugs I was prescribed and refusing to take any more. For a few years after I quit, every doctor I saw tried very, very hard to get me back on Cymbalta - which made me sick and permanently ruined my stomach. I cannot even tolerate NSAID gels on my skin now - the meds get into my blood and cause severe stomach pain! Withdrawals were awful, and it took me several years to begin to start thinking and feeling normal again. I still have fatigue issues and spinal pain - but the musculoskeletal pain was very much relieved. For ME, the various SSRIs and SNRIs I was given - actually caused the pain to flare up - the more I reacted to these drugs, the worse the pain got, and the more the doctors prescribed them for me. I know that feeling of, every morning, being hit by a Mack truck - and that feeling is gone; so is the severe depression I developed on these so-called "anti-depressants."

 

axxie - November 17

Amen to January's post. Someone else has gone through exactly what I went through and decided to go cold turkey. I will never go back on those so called SSRIs and SNRIs. I went through a period of depression on these and doctor's have tried pushing me on more meds. I politely and firmly said no. I fired a few doctors and even had to go see a psychiatrist because I thought I was loopy. It turns out I am not and he fully conquer that these medication are not for us.

 

January - November 20

HI Axxie! Glad to know you are doing well. I have not posted on here for a while. Where did everybody go??

Just wanted to add that I follow Dr. Peter Breggin - he's on Facebook and has published a lot of books about how BAD these psychiatric (make that "fibro") drugs are. He's a brave man to stand up to the big pharma companies. Anyway… months ago, he referred to some groundbreaking research done by an Australian psychiatrist who specializes in psych. drugs and how, in SOME people, they cause odd behavior or moods, suicide or homicidal actions. This amazing woman has examined six enzyme pathways involved in metabolizing these drugs. She has a video on Youtube. It's a little dense in places, but basically, how you react to these drugs depends on whether your body even produces these enzymes (some people do and some don't). Some of us only produce a couple of them. Different enzymes metabolize different drugs. It also depends on how much enzyme your body produces. These enzymes seem to be one of the keys to figuring out if the drug will work for you or not - and how much the dose should be. SO, I now have research I can point to next time a doctor tries to put me back on any type of SSRI or SNRI - it explains why they don't work for ME. For some of us, diet and supplements, along with alternative care, are the best cure we can find… with no side effects!

 

axxie - November 22

Hi January been awhile actually a long while, you get busy and life. The SSRI and SNRI did not work for me, and unless I am brain dead ain't going back. Like you nutrition is the best way to make fibro stay at bay. I have not seen the video but will seek it out. As for gluten free is my next thing to try. I am into fruits and veg and cutting down the meats and cheese and breads and sweets. It does help, I don't feel fibro as much except on those rare days when the weather gets colder.

 

January - November 28

Hi Axxie - been doing more research on celiac (read today that they now think 12% of the population has it - most undiagnosed). Medical forums like this are a wealth of information - real stories from real people, as opposed to what certain "establishment" websites or pharmaceutical sites claim, based on research that can be biased depending on who's funding it. I do not believe pharmaceutical companies want anyone to be cured - it would mean losing their revenue streams.

As more information comes out, I really think that for SOME fibro patients, gluten (and related allergies like oats, dairy, etc.) are major culprits. (I got a very bad reaction from eating raw kale! My PCP said raw food diets cause allergic reactions in a lot of people - fruits are OK, but some plants have allergenic chemicals in them, which must be de-activated by cooking.) Maybe food allergens don't cause ALL symptoms in ALL fibro patients, but many symptoms overlap - so for some of us it's worth trying a very strict gluten free diet. For me, it took a year to get better - everytime I ate a piece of bread, it put me back to the starting point. The diet is hard to learn - you have to find gluten-free brands, and learn all the chemicals that "hide" gluten -but it's really a pretty normal diet, I eat anything I want, just gluten free. I hope you give it a try and stick with it for 6-8 months to see if it works. You probably know this information, Axxie, but I'm putting it in for those who don't.

You can now google for lists of what foods and meds are safe. You can get breads and frozen dinners that are gluten free. Unfortunately, almost every major food brand has gluten - even packages of Bird's Eye frozen vegetables! I pull out my cell phone and call the company before I try any new processed food or OTC medication. Sometimes they say "we don't put gluten in it." On further questioning, they admit "we can't guarantee it's gluten free because we buy ingredients from other companies, and we don't test for gluten." Stay away! Recent new laws require better labeling, so if it's gluten free, it will say so on the label. If it doesn't say that, it's probably not. I now eat a lot more fresh food so that's healthier. (Although I just learned that a lot of mushrooms are grown on a gluten base - so they can be contaminated! So tricky!!) Lately, I'm also avoiding shampoo, lotions and makeup with gluten. Make up companies are putting barley extract in lipsticks. Some eye drops have wheat germ oil. If you can't understand the ingredient list, call the company or contact them online. (For those who don't know - gluten (the protein gliadin) is in most cereal grains, but especially in wheat, barley and rye. Oats are usually contaminated with gluten - but 25% of celiacs are also allergic to avenin, a protein in oats. Example: Quaker assured me their rice cakes were gluten free, but I still got a reaction from them!)


Doctors have considered gluten sensitivity and the severe form, celiac, to be "rare" for so long, most of them know nothing about it. I was at Johns Hopkins earlier this year - I told them all, emphatically, I was celiac, VERY sensitive to gluten. What did they give me? A drug with gluten in it. I could tell my treating physician did not really "believe" me, but I assumed he'd check any drugs for gluten - nope. Sooo…. I had to deal with a gluten reaction that lasted a couple months - skin rashes, dry cracked lips, joint pain, muscle pain, neuralgia, swollen glands, infections, headaches, soul-sucking depression, brain fog, and severe fatigue coupled with severe insomnia (sound like fibro?). Pretty hard to function with all that going on. I got all this from 4 pills - just a pinch of gluten. Not everyone is so sensitive to it - but I know a LOT of people who have gone gluten free and feel much better.

I hear you about the cold - it's been raining and snowing here, kind of early for that. UGHH! Take care, and stay warm! And you had some really good posts up on other threads!

 

axxie - November 29

I do not have celiac it has already been on the radar, but do have in intolerance to milk and any milk product aka lactose intolerant, I have an intolerance to chocolate and anything that has any sugar, I get sick. I have just started to read up on gluten and have slowly been taking it out of my diet, since I have lost 5 lbs and feel better. One thing I did that helped me more than anything is stop working, that has giving me more time to plan my day that is when I can. I have also start aquatic and even thought I am in pain the next day I feel much better. I can't seem to be able to go everyday I get too tired. Pushing forward, is going to totally gluten free, I am hoping it will help me also.

Happy Thanksgiving

 

Leezalyn - December 6

Hi, I'm new and have just signed up for the newsletter. Could you send me the article about recovery?
Thanx

 

Leezalyn - December 6

Oops, sorry about the duplicate post.

 

Message:


You must log in to reply.

Are you New to the forum? Sign Up Here! Already a member? Please login below.

Forgot your password?
Need Help?
Ask a Question