[Pup]

Dear Dr (name),

I have a few things I would like to talk about in this letter.

Firstly, my health. Since no one is bothering to do anything about it, I am not sure what to do. I am not asking you to “cure” me or treat me for my symptoms, I’m asking for help on how to cope as it does affect me in other ways. It’s very hard being so poorly, and it affects my mental state as well. My symptoms are as follows, so you know what is going on physically. They do point towards Chronic Fatigue Syndrome/Myalgic Encephalomyelitis but no one is doing much of anything right now;

• Fatigue
• Loss of memory and concentration
• Sore throat
• Widespread pain
• Unexplained muscle pain
• Pain that moves from one joint to another without swelling or redness
• Headaches
• Unrefreshed sleep
• Extreme exhaustion lasting more than 24 hours after physical or mental exercise
• Abdominal pain
• Sensitivities to foods, odours, medications and noise
• Bloating
• Chest pain
• Dizziness and balance problems
• Dry mouth
• Earache
• Irregular heartbeat/Palpitations
• Jaw pain
• Nausea
• Hair loss
• Muscle twitches
• Weakness
• Chills and night sweats
• Shortness of breath
• Tingling sensations
• Visual disturbances
• Weight loss
• Feeling of having a fever

These symptoms affect my emotional state daily. I feel depressed and low because of how poorly I have been, and still am. I feel very upset that people are minimizing how ill I am, or are saying it is in my head, this includes doctors. It makes me feel anxious because I do not know what is wrong, and no one is bothering to help me find out. I do get mood swings because of it, though even before I was poorly, I had mood swings then, but it seems to be more prone now. I would also like to tell you about this because if I do go on medication, you’ll need to know how unwell I am and the risk of feeling worse, which I really do not want.

I am also on Tramadol, which you know, and paracetamol. So this may cause interactions with other medications if it is decided I go on them.

I would like to talk about my mother. I feel she does not care very much about me, not like she should. She has and still is neglectful and abusive to me. This is worse when she is drinking. I feel her capacity to be a mother to me has greatly decreased. I feel I am not wanted or cared for in this house. I feel Charlotte is the favorite as well, and always have done. Her alcohol has really affected our relationship; however, it never really was existent. She is very insensitive and misunderstands so much going on with me right now. She is also, as you know, expecting me to go to college and she fails to realize just how much of a challenge that will be, not just mentally. I feel as if she doesn’t care how poorly I am, physically and mentally. It hurts. It really hurts.

My sister is no different. She’s worse if anything. She is very abusive towards me. I hate it. It stings so much. She behaves so awfully. I really don’t feel she is anything to me, especially not a sister.

I am willing to take medications if it will make at least one battle easier, I realize my mental state is awful right now and something needs to be done. I am afraid, to say the least though.

I am willing to work with you over the next year, or however long needed. I will try very hard not to “fire” you and run away.

I would like to know what to do regarding college, and regarding the next year. My mother is only worried about money income. She also thinks I won’t ever go if I don’t go this September. This is unfair; I realize I have a lot of struggles and battles, people have hardly any faith or trust in me, but it is my choice, and I feel I need to take the year off to get myself sorted out. I need my health sorted out, both inside and outside.

Another thing is I have been offered a babysitting job by my cousin to babysit her 1 year old and 3 year old. I have accepted, I do have a problem with saying "No". It is temporary and is going to be for a few months at most, but I am worried about it. My mental and physical state makes me feel anxious about doing this. I don't know if I'll even be up to it. I don't know what to do about this. I also would like to make this known as if I am going to try medication, if it will be okay for me to babysit. The first date is the 24th of this month. But I am concerned of how I will cope with this, so I'm unsure on what to do. I don't want to let her down, so I guess I will give it a try and keep to my word. She is also going to be paying me for it, so that will help for a few months.

I do need help, and you are offering it for the mental and emotional side of things; I appreciate this, as I do need it. Thank you. I know I am not the best at times, but when it comes down to it; I do need support and I do need help for many things.

I have filled in the questionnaires for both the eating disorder and the obsessive compulsive disorder. I am nervous and scared about what will happen. I am frightened to get rid of my scales, to increase my intake to 2500 calories, to be weighed regularly, to see someone for this, but I know it does need to be done and the longer it doesn’t, the harder it’ll get.

There are more things I’d like to discuss, and I’ll probably write another letter for the next appointment as I do struggle with communication, which you know, and I really do feel writing it down in letters is more expressive and a lot easier than talking.

I guess I am done for now, thank you for reading this.
Sarah.



The second letter to my psych.

I'm seeing her in two hours, taking my laptop with me as I haven't got a printer to print it off.

I'm nervous, anxious, wondering, contemplating, confused, hmm...

What do you think of this letter?
Is it okay?

I'll update what happens when I come back.
Thanks.
x

What do you think of this letter?

Is it okay?

[depressedalaskan]

((((Pup)))) I think it is a great idea. I do the same thing by printing out my posts and threads to share with my doctors, it has worked for me. Good luck I hope it works out for you. Hugs for your day.

[Pup]

*sighs*
Some good news, some bad news.
I'm really unsure about things right now and need time to process what was said and what is going to happen and etc...
sorry guys, will post about what happened later on, really drained atm.

[Soidhonia]

This is a very nice letter PUP. I hope your session goes well today with your Psych today. Take care. Soidhonia

[Sannah]

I think that it is an excellent letter.

About your symptoms, they sound like they could be from a gut flora imbalance. I have had this and so has my daughter and now my neighbor is being treated for it. We all went to an alternative doc. I was tested before and after and he really did change my gut flora around to be healthier. I had bacteria that was not supposed to be there and a yeast overgrowth. Afterwards I had neither of these. All 3 of us had food allergies too. We all went on to get further treatment for this with the Low Dose Allergen therapy which is called EPD in Britain (exzyme potentiated desensitization).

How did the appt. go?

[Pup]

Erm, I have been tested for a lot and been in and out of hospital Sannah, they couldn't find anything. It points towards CFS/M.E so... yeah.

[Eljay]

Originally Posted by Pup

Erm, I have been tested for a lot and been in and out of hospital Sannah, they couldn't find anything. It points towards CFS/M.E so... yeah.

Pup, great letter. Please tell us how did it go at the Psychiatrist? Thinking of you. Go Well.

[deliquesce]

Originally Posted by Pup

Erm, I have been tested for a lot and been in and out of hospital Sannah, they couldn't find anything. It points towards CFS/M.E so... yeah.

i think what sannah mentioned typically doesn't get tested for in hospitals, but you know best.

the good news is that if it really is CFS, then the best treatments for it are CBT and exercise .

[Pup]

^^ not from what my psych said.

[deliquesce]

ok, well - that's your psych's opinion. i'm just referring to the latest published metanalyses on treatment efficacy for CFS.

given that you are presenting with other problems, maybe your psych reckons a different approach may be better for you. but it wouldn't change the fact that CBT & graded exercise therapy have the most evidence for efficacy across the population of people suffering from CFS.

[Pup]

well Ive researched a lot and I do know that "pacing" helps but not full on exercise as people with cfs will have set backs if they exercise a lot. well anyway, I'm gonna see a CFS Nurse and she said I can't go to the gym or exercise too much or anything, and that it's more about coping with it and lifestyle changes as there is no cure.

I guess I'm unsure about things right now.

She said my heart and brain and ovaries are more than likely shrinking... she said if they took a x rays of my brain and heart and ovaries, they'd be smaller... She said my brain has slowed down... she said I'm undernourished... she said my heart is unhealthy because of what's happening... she said if my ovaries shrink altogether, I can't have children and my body will repress back to pre-adolescent... she said something about osterprosis as well, about the calcium etc not being absorbed properly and that I need to have a pint of full fat milk everyday and well... need to eat more... need to get healty...

She said I'm too weak for medication, too weak to go to college, she's going to call a CFS Nurse to come out and help me out... she said that if my eating is worse, it'll make the CFS worse, so I have to eat more...

She said there is no cure for CFS, just coping with it etc. She said the nurse will liaise with the college and work out a plan... I don't know about babysitting either... didn't ask what she thought... my mother doesn't think it's a good idea(she didn't before either).

She said we can't focus on the OCD until I'm more healthy.

She said I need to eat 3 meals and 3 snacks a day and I have to have pudding with my dinner(rarely do), I have to have full fat milk(we usually have semi-skimmed) too...

She said my brain signals are not sending the correct signals to my stomach, and that my stomach has probably shrunk too, and this results in constipation, and other issues...

I'm so unsure right now. I don't know anymore what to do. I have been told I could die from this before, but never thought it'd ever happen, and now it could if I don't recover...

Part of me wants to be pre-adolescent, part of me wants to... I don't want an adults body, or an adults life, I want to be little, a little tiny girl, taken care of, loved, cared for, hardly got that as a child, it was all over the place...

One thing she said is regarding my mother that sometimes we just have to get on with it, can't depend on her, she has her vulnerablities, preparing me to be a young adult, need to take responsibility for myself > all of this made me MORE scared and more on the verge of just relapsing but I dunno... I don't want to die... but I'm not entirely sure if I want to be here anymore... not suicidal... just overwhelmed and tired...

I feel really drained and weak and just blah, so for now, that's it...

[Sannah]

Originally Posted by Pup

Part of me wants to be pre-adolescent, part of me wants to... I don't want an adults body, or an adults life, I want to be little, a little tiny girl, taken care of, loved, cared for, hardly got that as a child, it was all over the place...

One thing she said is regarding my mother that sometimes we just have to get on with it, can't depend on her, she has her vulnerablities, preparing me to be a young adult, need to take responsibility for myself > all of this made me MORE scared and more on the verge of just relapsing but I dunno... I don't want to die... but I'm not entirely sure if I want to be here anymore... not suicidal... just overwhelmed and tired...

This makes a lot of sense Pup.........

The CFS/ME is autoimmune and this fits with the gut flora exactly. A lot of our immune system is in our gut and if we have a yeast overgrowth, other bad bacteria which isn't supposed to be there or not enough good bacteria this messes with our immune system and causes allergies and autoimmune disorders. This is what happened to me. I had many, many allergies and I had psoriasis which is autoimmune. After my treatment I do not have it anymore. Regular docs do not work on the gut flora. Alternative docs do this..........

[Pup]

Originally Posted by Sannah

This makes a lot of sense Pup.........

The CFS/ME is autoimmune and this fits with the gut flora exactly. A lot of our immune system is in our gut and if we have a yeast overgrowth, other bad bacteria which isn't supposed to be there or not enough good bacteria this messes with our immune system and causes allergies and autoimmune disorders. This is what happened to me. I had many, many allergies and I had psoriasis which is autoimmune. After my treatment I do not have it anymore. Regular docs do not work on the gut flora. Alternative docs do this..........

Mmk.
Well, I had a lot of testing done at hospital, including bacterial tests and urine tests and blood tests, either way, right now, the symptoms I've read about for gut flora don't entirely match mine.

I'm seeing a CFS Nurse (hopefully this time) probably in the next few weeks so I will ask her about it.

[Sannah]

You have to collect 3 stool samples on 3 seperate days to test the gut flora. It is a test that you do at home and here in the USA you send it in the mail to a laboratory.

http://www.majidali.com/yeast.htm

http://www.holistichelp.net/candida.html

I saw a lot of your symptoms in these 2 articles........

[Pup]

Ok as I said I will talk to my nurse about it. I also get constipation so I won't be able to do that.

[Trying & Caring]

I write letters to my pdoc & therapist and/or notes to take w/me to keep my concerns in the forefront & to get answers. I think it is very helpful.

I have many of your symptoms from ANXIETY--major this last week where I was driving to my T's office (been going there weekly for 8 mos.) & I got lost! The streets didn't look familiar. I felt "unreal." I thought I was on one street, but was on another. Anxiety causes a tingling in my arms, legs, hands, & feet; chest pains--thought my husband might have to take me to the ER a few days ago, but he said to take Klonopin (which I don't like to take during the day as it makes me sleepy) & do my breathing learned in DBT & see if the pain lessened. It did after 1 hr. & he said to take it easy that day--not to try to do all I normally do.

Also, have ringing in the ears, inability to think, etc., etc. It is amazing what anxiety can do to you!!

Also, have you been tested for pernicious anemia? I didn't find out I had that until I was dxed w/bipolar & they ran a battery of tests that they don't "normally" do. Pernicious anemia causes depression, weakness, fatigue, etc. If not treated it causes insanity (husband said they didn't catch it in time for me!). Usually the person has pernicious anemia for about 10 yrs. before it is correctly dxed (much like bipolar). It is most common in those of Northern European descent. But w/B-12 shots monthly now (at first I got a shot every week until my levels came up to normal) my energy level has increased a lot.

My internal medicine doc checked me very thoroughly for physical conditions that could cause my symptoms or make them worse (bipolar symptoms overlap w/the symptoms of the medical conditions)--also had low thyroid which also has the same symptoms.

I think your letter was very informative. How did doc respond?

[Hunny]

Pupp

Just so proud of you...

Just so honoured to know you...

How to tell you, how deeply we feel for you and your life! How you have created these amazing letters...it's just our words seem so inadequate.

Well done, 'little friend, little tiny girl';, you are fighting for this life of yours. We remain firm and strong beside you as you take the next baby-steps to the nurse and possibly to explore the information from Sabby.

Seems you have arrived at a life and death place, little friend and you have chosen life. Hang on. We are here, and many others.

Hunny

[Pup]

Trying & Caring, This isn't down to anxiety, if you're suggesting that.
I fell ill after receiving boosters last December, and have been since then.
I am playing guessing games on how to feel better until something is done about this.
I have been to hospital many times, multiple testing has been done, and after coming across CFS, I think it is a possibility this is down to CFS. I'm seeing a CFS Nurse soon about things going on for me so that, I hope, will provide some light.
The malnutrition and my ED is making the illness worse.
If I have come off as rude or upset then I apologize.

Hunny, thank you, I appreciate your words. x

[pachyderm]

Originally Posted by Trying & Caring

Also, have ringing in the ears, inability to think, etc., etc. It is amazing what anxiety can do to you!!

I've read that that kind of thing is something that our systems tend to do automatically when we are frightened: everything shuts down except some automatic responses to "danger" so that the brain can concentrate on that. Sometimes not a good way to go, but the brain goes on autopilot, when that might not be the best response. It can be very hard to learn to change that automatic response!

[eskielover]

Natural medicines are usually not touched by normal medical Dr's....nor by pdocs......however, just as we need a combination of our medical Dr's & our pdocs, we also ned to add to the team the natural medicine specialists that bring in all the other aspects of our body together.

It needs to be a team approach......thought you would be interested in looking at this web site on natural medicine.....gives a lot of food for thought.

The problem is when we close our minds to all the possibilities, then we are limiting our ability to get well. One so young as you should not have a closed mind.....that is for the 90 year olds.....not for young people who should be wanting to live a full & enjoyable life.

The Dr that has put together his natural medicing practice has a radio program that I enjoy listening to (I don't have a TV where I live in the country). I listen to all the problems people have when they call in & all the changes diet, minerals, vitamines, life style change...including what your ED does. It is the most fascinating miracle changes that are able to happen if we are open & willing to make the changes.....even for a healthy person it can make a huge difference in how they feel.
http://www.drasa.com/natural_medicine.html

Oh yes, BTW, I have been hospialized with IV nutrition for anorexia many times....my anorexia is created from stress, not body image issues, but the results are the same....only my problems began at a much older age (42)....& the last time I was in the hospital for anorexia was 4 years ago after going through a trauma with my Mother who was dying of cancer & I caught the home care person stealing her ID & abusing her....long story.....so won't go into in here.....so I know everything that anorexia does to the body......most of what is on your list, I was experiencing between the anxiety from the trauma (PTSD) & the anorexia. Many of your symptoms will be gone when you deal with that. That in itself throws off your blood work so far, it's almost impossible to tell other things until you get stable.....you don't need to be treated for something you really don't have.

Part of me wants to be pre-adolescent, part of me wants to... I don't want an adults body, or an adults life, I want to be little, a little tiny girl, taken care of, loved, cared for, hardly got that as a child, it was all over the place...

Sounds like you are in need of attention & care. To be honest, when I was in the hospital being treated for the anorexia at the time my Mother died (I went back into the hospital that night after I told her good by....knew that would be the last time I would see her) I was glad for the care & really didn't want to leave the care & attention I was getting along with the psychologist my MD had coming to visit me daily......after what I had gone through, I was in desperate need of caring around me. The illness was real.....the care was needed for more than just the illness it was needed for my emotional state also.

I have recovered now....not only that, but I sold my Mothers home & left my husband to live alone 2200 miles away across the US....not needing the care & attention anymore, I have as my living conditions with my husband were contributing to much of my emotional problems.....when we start getting little pieces of our life straightened out, everything starts to get better & some of the illneses we had end up not being there anymore either.....many illnesses are are caused by emotional issues they really do cause physical problems......add to that the betting our bodies back into balance along with the mind, many things get better. It's when we get stuck in a rut & don't change the picture is when we don't get anywhere....you are too young for that to happen to you

Look at the big picture of our life....& see what it tells you,
eskielover

[Pup]

I'm too worn out and drained to respond to your post, but thanks for typing all that out, got some things to say but will say one thing > as I said earlier, I had an onset of falling ill after my boosters in last december and have been since then, stress and emotional things make it worse, hence why I have to recover if I want the CFS to get any better or any way of being able to cope with it and do things in life.

[eskielover]

I had an onset of falling ill after my boosters in last december and have been since then

This isn't the first time I have heard of that happening....medical Dr's don't like to admit to these kind of things either. I have had many really bad side effects to meds that Dr's have given me & they all seemed to be rude about it & in denial that it could possibly happen.

That is when it is good to take that information to the natural medicine people....they are much more open to that information & are usually more willing to look into it much deeper & treat what they find.

I googled 'booster shot side effects' & 'reaction to booster' ...I am sure you have already researched this also.

http://www.thinktwice.com/mmr.htm

http://www.cdc.gov/vaccines/vac-gen/side-effects.htm

http://www.mayoclinic.com/health/dru...side%2Deffects

Since there is a known point in time & it is correlated with the booster shots, it is logical to assume there is some connection between the boosters & your ill feeling.....things like that are less likely to show up in the testing that the medical profession has done either.....reactions can cause very subtle things to be off & very difficult to detect except by a Dr who specialized in the subtleties of the body. Usually when there is a way of reversing things like that when some chemical change has taken place.

It is important for your parents to support you to get to the bottom of this.

Getting the body back into balance & cleansed of where it is at this point is also a good starting point....that way the medical Dr's know exactly what they are working with & what it is they need to focus on....that is the beauty of the team work approach with the natural medicine....it isn't either/or....it is both & there is nothing better than having a team working for our well being.

Hope you get things sorted out.....sounds like you have quite a few obstacles that are working against you besides just your health & mental issues.....sadly, our emotional state plays a huge part in our physical & mental wellness.

Best wishes,
Eskielover

[Pup]

ok, well, I am seeing a CFS nurse soon and that is a high possibility on what the boosters caused. so, yeah.

[FooZe]

Originally Posted by Pup

ok, well, I am seeing a CFS nurse soon and that is a high possibility on what the boosters caused. so, yeah.

Pup, I thought that was great info you posted in another thread recently.

Here's something I've been thinking of mentioning to you. I don't know if you'll even be interested but it still wouldn't be OK with me if I skipped over telling you about it just because I thought you might not want to hear it:

When I was your age and a bit older I assumed that unless I was living in a desert or a dungeon or something, I'd be sure to end up eating enough of all the nutrients I really needed. I had plenty to eat and none of the kids around me were getting scurvy or pellagra or anything, so why should I have any problems either?

Eventually I happened to catch a horrendous case of flu that kept me in bed for two weeks. Afterwards, just to reassure myself that there was nothing to worry about, I decided to look up what I'd actually been consuming by way of vitamins in a typical day. I wasn't reassured; it turned out that I was clearly coming up short on a couple of important ones even by conventional standards, and I came across a couple of books by Adelle Davis that pointed out that conventional standards were likely to underestimate what we really needed and overestimate how much of it we were getting.

In particular, Davis pointed out that stress of any kind greatly increases our need for B vitamins especially; that not all the nutrients we need have been fully identified yet; and that taking supplements of only some vitamins may actually increase our need for others.

I'd love to see you and your health advisers rule out the possibility that the boosters that you've mentioned could've stressed you into a nutritional deficiency. I do hope you'll look into this even while you're trying other things.

Anyway, best of luck to you!

[Pup]

Well, I've had a lot of tests that I think have ruled nutritional deficiency's out.

I honestly think this is C.F.S/M.E as I have many, if not all, of the symptoms.

I am seeing a nurse, like I said, about it soon, and I am hoping for some answers and solutions. C.F.S/M.E cannot be diagnosed by any specific test, just elimation, so I'm sure they'll do yet again MORE testing. I'll mention it, but I don't think it is that.

I've also been told it is useless to have any supplements as my body won't absorb it so... yeah.