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This illness is impossible
38 Replies
Rahiin - June 6

I don't mean to rant, but I need to get this out.

I don't understand how people deal with this illness. It has physically disabled me so much that I can only do basic things by myself. Before all this I was a athelete, I was always playing outside, I could bench press more than any girl in my class. Now I can barely go up and down stairs. It literally has ruined my life, with no exageration.

I don't understand how people get medicine and treatment for fibro from doctors, I have looked through my medical records, and I have seen no fewer than 95 doctors in the past two years. All types of doctors: pain management, rhuemotologists, nuerologists, physical therapists, and regular family doctors as well. I mean, those are the types of doctors you see for fibro, right? But none of them do anything for me, they just keep sending me to another doctor.
I bring them information on fibro, I am courteous and not short with them, but nothing works. They don't do anything for me.
What am I supposed to do? I am a very high risk person, because I have other medical conditions, (insomnia, vertigo,) I live by myself, and I have no stable income. I need something, anything to get myself back on my feet. I am willing to do hard work you know, but I have no problem admitting that I need help.
Feel free to critize me or to give me pointers, I don't care at this point. Does anyone have advice for a girl who feels like her whole world is in shambles?

 

Pikespeak - June 6

Hi Rahin! Welcome! You have come to the right place for support. You don't say if you are taking any meds or supplements. What kind of diet do you follow? My first suggestion is that you need sleep to recharge your muscles. So if you aren't on a med for sleep, get something! I have been on Ambien for a year and LOVE it! My daughter (who also has FMS) tried Lunesta and found it to make her groggy in the morning. Each person needs to figure out what will work for them. Some folks use OTC meds or natural sleep aids. Now that I get a good sleep (but not perfect), I have fewer bad days. I still have pain, but it is lessened. Here's hoping you will have a better day tomorrow! Please keep us informed--we care!

 

Peter Chapman - June 6

I am a hypnotherapist in the UK.
I am beginning to learn about fibromyalgia and have just been on a workshop about chronic illness run by Kevin Hogan in London.
I would really like to help people at some time in the near future and will be working towards that goal from now.
Here are some points that may ring true with you.
About 90% of fibromyalgia sufferers are women; they are generally the super women who do everything at home and work full time as well. An extremely high percentage of sufferers would have had a trauma in their lives within 6 months of the onset of fibromyalgia.
It is entirely possible that it is a message to make changes in the sufferer's life. They may have been 'sent signals' before via other, less debilitating illnesses, coughs, colds, flu etc. etc.
From what I have learnt, I believe that hypnotherapy practiced by somebody who knows how to deal with chronic illness (not your common or garden hypnotist/suggestion therapy) could have a positive effect.
This is my opinion. There may be people or groups out there who believe this is rubbish.
All I can say is 'what have you got to lose?'.
If nothing else has worked, discuss the possibility with your medical professionals; seek out a competent (very important) professional hypnotherapist.
By the way, if they say they can cure you with a few suggestions over a couple of hours, forget it!
We are talking about proper therapy that may take weeks or months.
Everything I've said here is based in my limited knowledge. I would urge you to do further research in this area and discuss with your doctor / medical professional.
All I can say is, if your doctor has said there is nothing more they can do for you, what choices do you have?
Good luck.

 

January - June 7

Peter, Thank you for your interest in this disease. I hope you will read up on the many stories here, and post any relevant information you have. I commend you for reading this website and educating yourself on what "we" have to say about it.

I think there is something of value in your post. I agree that many of us are burned out super-achievers. I also think many of us have history of various kinds of long-term trauma or abuse, or a severe and sudden occurrence of the same thing. I think right now, several different disease entities are jumbled together under this heading. Some may be undiagnosed infections too. But I do believe the body cannot heal without the mind's help, and properly done hypnosis accesses those deeper areas of mind.

How would we go about finding a "properly qualified" hypnotherapist? We have all wasted a lot of money on ineffective doctors… as you point out, this would require long term treatment.

 

Rahiin - June 7

Pikespeak

Thank you. I have been on this board before, just not in a while cuz of the illness. I eat very healthy, lots of fruits and vegetables and little sugar and fat. I've been trying so hard to get medication from any of the doctors that I have seen, but none of them will give me anything at the moment. So I am not on anything.
I have tried Ambien and Lunesta before, but they did not have an effect on me. I've tried dozens of OTC meds, natural herbs, teas, etc, to help with my sleep, but again nothing had the slighest effect.

Peter Chapman

Thank you for the information. I have tried hypnotherapy before, once. I researched the doctor before-hand, and by all that I could tell, and by his other patients, he was a good and competent doctor. But when I went there it was an absolutly terrifying experience. I will never do it again. Sorry but it's not my thing.

 

Peter Chapman - June 7

Thanks for your comments, much appreciated.
I take your point about undiagnozed infections; this is obviously down to the medical profession and I would definitely not want to get involved with that. However, it seems there are many (possibly thousands) sufferers who have been to doctors for years. Either they have no answers or don't have the time to treat the 'person'.
When I say a qualified hypnotherapist, these are the things I believe you should look for:
1. They should belong to a 'proper' organization. For example, in the UK, I belong to the APHP (Association of Professional Hypnotherapists and Psychotherapists). This organization is affiliated to the new CNHC (Complimentary Natural Healthcare Council) which is a voluntary organization setup by the UK Government to regulate (albeit on a voluntary basis) complimentary practicioners in all sorts of areas, including Hypnotherapy.
2. The Hypnotherapist MUST also be a qualified Hypnoanalyst (there is a difference between a hypnotist imparting suggestions and proper analytic therapy).
3. Talk to your potential Hypnotherapist and ask them how they would approach your treatment. It should involve :
- a comprehensive case analysis of 2 to 3 hours probably
- regression therapy, parts therapy and time track therapy over a number of weeks/months.
4. If the hypnotherapist says this will be easy then they probably don't know anything about it.
5. They should send you away with 'homework' i.e. you will need to work on things outside of the sessions with the hypnotherapist.
6. Ask them what their track record is for treatment of Fibromyalgia.
7. Don't be afraid to ask lots of questions. If they are professional and competent, you know your body and your suffering and you will probably know if you think they can help you.
8. Basically, what I'm saying is 'don't just look through the local papers and find the first hypnotherapist you find'.
Obviously, these are my opinions based on a fantastic worshop aimed at Hypnotherapists wanting to help people with Chronic illnesses including Fibromyalgia.
I will be continuing my work and will hopefully be one of those hypnotherapists that people can contact in the future.
Good luck.

 

Peter Chapman - June 7

I appreciate what you are saying and I'm sorry to hear about it.
I have no idea what your experience was like.
You say you went to see a doctor? Did they specialize in Hypnotherapy? Specifically, Hypnoanalysis?
Did they perform a comprehensive 2 to 3 hour first session including a case analysis?
In order for (especially chronic illness) treatment to be effective, the hypnotherapist MUST build a rapport with their client.
It is not like sitting in front of a doctor for 10 minutes and getting a prescription for pills.
We are talking about the WHOLE person, their life, their beliefs, their relationships, their problems, fears, hopes, expectations.
As I say, I don't know what your specific experience was like.
I hope what I have said makes some sense to you and you can find some solution and peace.
Good luck

 

January - June 8

Peter, thanks for the information. It sounds as though what you are describing is really a good therapist, also trained in hypnotherapy. (I'd love to start a thread on the General Discussion board about this.) So really, anyone interested would want to look for a well-qualifed therapist/hypnotherapist, as I'm assuming deep issues (like previous trauma) would be addressed. I read a study (forgotten the name, but you may be aware of the research) indicating that almost 100% of the people she interviewed with fibromyalgia had a history of abuse. Someone who has only briefly trained in hypnotic suggestions would NOT be qualified to deal with deeper work like this - and as Rahlin mentioned, could cause some damage.

Glad to have you on the website, and hope you will keep posting information. : )

 

Peter Chapman - June 8

January.
That is interesting. I'm not aware of that research in terms of abuse. I will look into it though.
I agree about dealing with deeper issues. It is VITALLY important that the therapist has the appropriate training and experience.
There are stories that come out in the media from time to time and it hurts the individual and my profession ... which, of course, has a knock-on effect that people are then reluctant to try hypnotherapy because of the few bad apples out there.
I know what training I have received. I know what issues I am able to deal with and which clients to refer elsewhere.
The most important thing ALWAYS is the client's welfare even if it means I lose business. It cannot be any other way.

In terms of abuse and hypnotherapy, there have been cases where the therapist LEADS the client and ends up with them believing they were abused. This is VERY important. The therapist must only GUIDE the client.
Because of these cases, everybody thinks that all hypnotherapists may get the client to believe something that actually never happened. The properly trained hypnotherapist is aware of these issues and many others and will not allow this to happen.

 

January - June 8

Hi peter. I googled "fibromyalgia and abuse" and "fibromyalgia and sexual abuse" and came up with a multitude of references! I specifically remember the study I read, and the author claimed an almost 100% correlation between FMS and abuse, often sexual abuse - so it was controversial. Now, there appears to be much more research into these areas - some contradictory. I don't see any research substantiating the 100% correlation, or anything nearly that high. But there a number with some correlation between trauma and fibromyalgia.

From a quick scan of articles, there appears to be more scientific research on the effect of childhood trauma on the HPA and cortisol levels. Also, some genetic research pairing fibro with genes linked to depression and what I would call "sensitivity."

Just speaking anecdotally, I was a victim of prolonged and violent child abuse, and I can think, right now, of at least five people I know with fibromyalgia who "admit" to being victimized as well. As you know, the very recognition of abuse is often difficult, if a person wishes to maintain family ties. And yet, the recognition and validation of it leads to healing. If you were abused, it was NOT your fault, and the processing of it involves something like the steps of a grief reaction. It may also tear up the family, so understandably, people are reluctant to admit this even to themselves.

There is an excellent book, Betrayal Trauma by Jennifer Freyd. Her premise is that, to survive in the family unit, the child MUST repress and "forget" the abuse, especially if it is egregious and comes from the parent(s) - because the child is totally dependent on these people for survival and must get along with them.

I think there may be validity to the idea that living in a state of constant fear and arousal causes the muscles to be abnormally tensed (along with other changes in body systems) - and eventually there is a breakdown of some kind. It is also interesting that victims of abuse often compensate by becoming over-achievers or perfectionists - and many FMS people seem to have those traits - along with the heightened sensitivity.

As you mention, badly trained therapists - in any mental health field - can take advantage of clients by taking on those who should be referred elsewhere - or by encouraging "false memory" syndrome. This is something all therapists should be aware of- and clients too! Never let a therapist put words in your mouth.

Peter, I'm interested to know what approaches hypnotherapy is currently taking towards dealing with fibromyalgia. Are they mostly aimed at resolving emotional issues - do they deal with relaxation - or retraining mental focus -- or what? Decades ago, I took classes in self-hypnosis through Silva, and I thought they were wonderful. Thanks for your info!

 

Rahiin - June 9

Peter

As far as I know, all of my symptoms fall under one of those 3 conditions, fibro, insomnia, and vertigo. There aren't any undisagnosed symptoms, all are accounted for lol.

Yes, I did see a hypnotherapist. We got through about half an hour of therapy before things got terrible and I had to leave. To answer your question, He did ask me a lot of questions, He wasn't like "uh huh yeah" or anything like that.

I agree that your field's reputation has been tarnished a bit, because I'm not the only one by far with a bad encounter. There are hundreds of others. That's why I was so relectuant to go in the first place. I already knew of my abuses before going, so he definitly didn't "lead me" into believing something that was not true.

Can you give me an example/story of how
hypnotherapy helped somebody with fibro? Maybe we can learn from that.

 

Peter Chapman - June 10

Rahlin.
I don't have any case studies of my own. As I said at the start of this thread, my experience is limited but I am interested in helping people with chronic illness after attending the workshop with Kevin Hogan in London. I know of people who have been diagnosed with fibromyalgia and I have some idea of how desperate they are. I'm hoping to help some of them as part of my efforts to gain more experience.
As far as I know, the treatment via a hypnotherapist would go something like this.. and I've already detailed some of this in an earlier reply in this thread:
1. Just want to point out here that this is not to the exclusion of any other treatment being prescribed by the medical professionals; and I would want the consent of a client's doctor before proceeding.
2. A detailed case study over 2 to 3 hours. This is not only for the therapist to undertsand ALL the issues surrounding the client's life but also gives the client a chance to TALK. In a lot of cases, sufferers don't get the chance to talk much about their problems, not only with the pain etc. but also within their family life, relationships etc. This can have 2 effects: it builds rapport between the therapist and the client and secondly, it can be cathartic for the sufferer to offload a lot of issues that they may be keeping to themselves.;
2. The second phase would be regression therapy in 2 parts, potentially over a number of weeks. The first part is regression in terms of the body and its symptoms; the second part is in terms of feelings and emotions.
3. Once regression therapy is complete, 'parts' therapy may begin. This is where the client is guided to negotiate within themselves. There may be one part that knows why they are suffering and wants it to continue for some reason (this could be the subconscious, non-thinking part) and the other part that wants the suffering to stop (the conscious, thinking part). It is entirely possible to negotiate some kind of 'truce' between these 'parts' so the individual can find a way forward without pain as time moves forward.
4. Once parts therapy shows some kind of success (and this could be a number of weeks), then time track therapy can be used to move the client into the future.
I am only touching on this model because I have limited experience myself. There will be hypnotherapists out there who can help people now.
Some may have different methodologies to what I have described above.
Everybody has to remember that this is not 100% guaranteed for everybody. Just like all medication doesn't work for everybody. However, I strongly believe that this will help a lot of people. Let's face it, for people who have been told by their doctors that there is no more that can be done, it would appear to be worth a try.
I hope my comments help.
I wish I had more answers.
I hope to have more answers when I complete some specific work myself.
I'm just starting on this long road myself and hope to help people. I realize this is not an exact science and there are lots of frustrated, suffering people out there.
I don't want to offer people false hope but I do really believe there is help out there for some.
I hope this is of some help to you.

 

baxter1959 - June 11

Have you gone to a Doctor who specializes in Fibro? My doctor sent me to a specialist & I though I had arthritis. He diagnosed me with Fibro had 18 tender points which is the top I guess. But he is a very nice doctor and listens to me. He gave me Cymbalta which had an immediate effect. I could not stay on it b/c lost my insurance.

 

baxter1959 - June 11

Does anyone have had pain. both my hands are hurting right now & I am having trouble gripping things.

 

KDSMITHRN - June 20

HELLO RAHIIN ( PLS. EXCUSE ALL CAPS. MY LOWER CASE P DOES NOT WORK) I LIKE U WAS VERY ACTIVE. I WAS A NURSE FOR 23 YRS., COMPETED IN MANY TRIATHLONS. I TORE MY LEFT BICEP MUSCLE, HAD IT REPAIRED AND I FELT LIKE I HAD THE FLU ALL THE TIME. DURING MY POST-OP COURSE I KEPT TELLING THE DR. THIS OVER & OVER, I WAS TOLD I JUST HAD 2 WAIT FOR MY BODY TO METABOLISE THE ANESTHESIA. WELL THAT NEVER HAPPENED.I FOUND A GREAT NEUROLOGIST BUT IT TOOK 6 MONTHS. I TAKE ULTRAM, NEURONTIN, ELAVIL,ZANAFLEX,& KLONOPIN. U JUST HAVE 2 FIND A DR THAT KNOWS HOW 2 TREAT IT & IS WILLING 2 WORK TO FIND THE RIGHT MEDS. FOR U. I AM 100 % DISABLED NOW. I ALSO HAVE A RARE FORM OF MUSCULAR DYSTROPHY 2 DEAL WITH. KEEP WORKING 2 FIND THE RIGHT DR. IT IS A CONSTANT STRUGGLE. I ALSO EXERCISE BY WALKING & SWIMMING EVEN WHEN I DO NOT WANT 2.

 

KDSMITHRN - June 20

SORRY ABOUT ALL CAPS. MY LOWER CASE P DOES NOT WORK. I HAVE BEEN VERY CURIOUS ABOUT CHILDHOOD ABUSE AS IT RELATES TO FIBRO. I WAS ABUSED SEXUALLY & PHYSICALLY & EMOTIONALLY. I JUST WONDER WHY IT APPEARED WHEN I WAS 39. I AM NOW 48. ANY THOUGHTS ON THAT ??

 

January - June 22

Yes. Have you carefully looked back to think about whether you had symptoms when you were younger - just not so severe? Maybe they were fleeting and only lasted a few days? A lot of abused kids develop a "stoic" attitude where they deny the pain they feel - to survive.

My theory is that it takes a while for the muscles (or whatever complicated system is involved, like maybe the HPA axis?) to completely wear out. It may also be tied to insufficient intake of nutrients, lack of restorative sleep and the breakdown of normal aging over the years. I think we are resilient and self-healing, but only up to a point.

As some authors say, "the body remembers" the abuse. If this tension isn't really worked through well and healed (and I don't know if you ever really heal from child abuse…?) perhaps it stays with you, and you are just primed for a breakdown later on in life. It seems that a lot of us develop fibro in later years after some kind of physical or emotional trauma. Maybe it's just the "last straw." But I'm interested to see the number of young people diagnosed with it now - people in their teens or 20s.

Reminds me that maybe there are different causes for fibro….?

 

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