Looking for insight

[Want to feel well!!!]

I posted this in an MS forum, but I am wondering if this sounds familiar to someone with fibromyalgia and could shed some light...

This is the first day I have been on the MedHelp website, and I am amazed at how many of the comments mirror my experiences and that there are people who can actually understand this medical "adventure" I have been living through. All the blood tests I have had to eliminate a long list of diseases (such as Lyme disease, anemia, rheumatoid disease etc.) are negative.

I was just in the ER last week because I could barely walk (my feet and legs felt like lead weights), my hands were not working, and I was vomiting. The ER doctor was a condescending prig and said to me, "So, you're feeling a little run down? We'll give you something to make you feel better." As he walked away I asked what he was prescribing (but I already knew) and with his back to me he said, "An antidepressant." I told him I wasn't depressed and he said, "Sounds like it to me," as he walked away.

I have an appointment with a neurologist in a few weeks, and I had prepared a list of symptoms for that visit. Before going to the ER, my husband printed out the list to take along, hoping it might help.

_______________________________________________________________

The "list"...

Fatigue
Insomnia
Muscle cramping/dull pain/Joint pain
Neck ache/Stiffness (radiates down my spine when I turn my head either)
Muscle twitching
Skin sensitivity in some areas
Hands are weak (Writing or typing can be difficult)
Numbness and tingles in fingers and toes
Head feels “fuzzy”
Face feels oddly numb
Some numb patches on skin
Dropping things
Shaky at times
Headaches
Eyes hurt (they are very dry at times)
Focusing my eyes can be difficult
Increase in severity of symptoms (vertigo and weakness) on hot days (also if I engage in any activity on a hot day the next day my symptoms seem to be worse)
Off balance, disorientation, vertigo
Falling down due to lost balance
Light “shock” feelings radiate throughout my body
Eye movements can correspond with a sound in my ears (like drum brushes on a drum)
Sensitive to sounds…very “jumpy”
Diarrhea
Vomiting
Short-term and some long-term memory problems, constant forgetfulness
Hard to recall words
Reading can be difficult
Confused during paperwork tasks
On 2 occasions my right hand was shaking uncontrollably…each time for only about 30 seconds
Itchy feelings that cannot be soothed by scratching
I choke on my own spit at times
________________________________________________________________

The ER doctor did not even examine me (he sent in a medical student). He did say he read my symptom list, but the best he could do was prescribe an antidepressant? AND for all of his hard work he will receive payment from my insurance company? What is wrong with this system??????

Also, my primary physician had taken me off antidepressants because they did not help.

My fear is that if I do not get the proper diagnosis and on the right treatment there could be unnecessary damage happening to my body.

I had had an MRI in May, and I did speak with a neurologist while I was at the hospital last week, and he was the one who stated that there is no indication of MS, there were no tests that could be performed at the hospital to help with a diagnosis, and that I had to tough it out for the next few weeks until my neurologist appointment, where all the proper tests could be performed.

Through all of this, I am convinced that at some point I will get an answer and that I am not crazy!!!

This all started the summer of 2001: I was a healthy, happy, active woman and loved running, weight training, and cycling. I was in the best shape of my life. I ran 6 days a week and was also training for a half marathon. One day I ran seven miles but I felt “off” and it was oddly difficult for me. The next day I was feeling overwhelmed with exhaustion and as it turned out, I never ran again. After a few weeks of total exhaustion, I went to my doctor’s office and a Physician’s Assistant put me on an antidepressant, stating that women my age have a lot of changes happening in their bodies and this was “normal.”

Since then I have been experiencing symptoms on and off, each time they seem to worse, but this past spring thru the current date has been, by far, the worst.

I have been cycling on and off since 2002, even riding in 3 or 4 century (100 miles) rides, but this summer I have been unable to ride. I separated my shoulder a few years ago in a fall, and afraid to ride due to the head fog I am in and I might fall again.

Whatever I have, I need to know so I can get treatment and get on with my life! I feel like I am in limbo.

[PlateletGal]

Dr. Mark Shaw wrote "What Causes Fibromyalgia and CFS" ? and wrote about the antibiotic therapy treatments,  as well as the recent research study at Stanford University. If I remember right, he also was diagnosed with CFS and ran into the same barriers that many CFS patients', including myself, have run into. One of his therapies for CFS uses antibiotics and apparently has a high success rate, but I choose to remain with the MP because I believe at this point, I'm too ill to do his protocol. The herxing reaction from the antibiotics would be too strong. Herxing means that the bacteria in your body is dying and so you feel worse after taking the antibiotic.... which is good because it means that it is working.

For additional information on the MP, you can use a search engine and type in "Joyce Waterhouse, Ph.D." + "Marshall Protocol". Dr. Waterhouse also has CFS.

Since the MP is relatively new and a research protocol (although the medications are not research medications and any physician can prescribe it), there aren't any numbers yet, etc. Although they do have many success stories posted on their website. Mine isn't on there --- but I still have a ways to go yet.

[PlateletGal]

Yes --- my nic on there is PlateletGal . Its been awhile since I posted though and if you read my posts (or any posts for that matter), keep in mind that the MP makes you feel worse because of the herxing (I mentioned earlier). It is very similiar to doing a detox diet....

[PlateletGal]

Dr. Mark Shaw wrote "What Causes Fibromyalgia and CFS" ? and wrote about the antibiotic therapy treatments,  as well as the recent research study at Stanford University. If I remember right, he also was diagnosed with CFS and ran into the same barriers that many CFS patients', including myself, have run into. One of his therapies for CFS uses antibiotics and apparently has a high success rate, but I choose to remain with the MP because I believe at this point, I'm too ill to do his protocol. The herxing reaction from the antibiotics would be too strong. Herxing means that the bacteria in your body is dying and so you feel worse after taking the antibiotic.... which is good because it means that it is working.

For additional information on the MP, you can use a search engine and type in "Joyce Waterhouse, Ph.D." + "Marshall Protocol". Dr. Waterhouse also has CFS.

Since the MP is relatively new and a research protocol (although the medications are not research medications and any physician can prescribe it), there aren't any numbers yet, etc. Although they do have many success stories posted on their website. Mine isn't on there --- but I still have a ways to go yet.

[Curls]

Dr. Mark Shaw is about Alexander Technique?  That's not related to the Marshall Protocol.  It has it's usefulness, but it's very limited.  I really was looking for critical evaluations of the MP.  Success stories and optimism are easy to find on everything that ever comes out.  

Hope it keeps working for you!

[Curls]

Hi platelet girl,

Thanks for all the info.  I'll check it out as I get time.  After I posted to you, I found one article that gave a good synopsis.  It sounds interesting, but also a proceed with caution.  I've added it to my list for my next dr appt at the end of August.  He's got a CFS interest and generally keeps up with what's out there.  It always interesting to ask him his feedback both in general, and for my specific case, since it's often a surprise with a go-ahead on odd things and an "i've had bad feedback" and mild sounding things.  If it's useful, I'll post it here.  (I don't remember the logic at the time, but we opted against the microplasma treatments - it might have been my throat closing reactions to antibiotics - but I remember it being very logical.  But I think it was that it wasn't all it was cracked up to be or didn't apply in my case, which was disappointing.)

I'd love to find some non-success stories and see what those are like.  It's good to know the lower bounds as well as the upper.

It certainly would be worth doing if it resulted in longer term improvement, and not that bad to do (relative to all the limits that CFS imposes anyway.)  One prime question would be if I have that particular "dysfunction" that this protocol treats.  If the treatment works, which many seem to say, than one can only hope I have the problem!!

I don't know how the h-ck I'd do the antibiotics, but maybe at the low doses and alternating days it would work somehow.

Does having the same NIC mean the same name, platelet girl?  I assume so.  I'll look for you when I get over to that site to see your experiences!!  

Thanks again for giving me more info on this.  

[PlateletGal]

Hi Curls,

According to Med Help's rules, we aren't supposed to give links (except government and/or links approved by Med Help). However, you can find some really good information by searching these terms/words:

"Garth Nicholson, Ph.D" + "CFS" + "mycoplasma" --- articles on mycoplasma found in CFS patients'

"Marshall Protocol in simplified terms"

"Marshall Protocol" + "success stories"

"Immune Support" + "Marshall Protocol"

"Dr. Mark Shaw" + "What Causes CFS & Fibromyalgia" (Part 2 --- highly recommended).

There have been studies that have found that many people who have fibromyalgia and CFS have bacteria in their tissues & cells, due to cell wall deficiency. From what I've read, the presence of this bacteria is causing an irregular dysfunctional immune response. People who have vitamin D dysfunction, have this bacteria and are candidates for the MP.  I'm guessing this is why the military is treating patients' with Gulf War Syndrome with antibiotics.

There is a ton of information on the MP website, although some of it is a little complicated.... I use the same nic there and you can private message me if you'd like with questions and I can give you links.

I know I've made progress on the MP because I can now eat anything with gluten (wheat) in it. Also, recently I took a break from the MP and noticed an improvement in my health. The MP does require you to make some sacrifices, but it is well worth it in the end (my opinion).

[Curls]

Hi,
Good to see you.  I see you post a lot.

I've seen a little about the MP recently, but not the details.  Do you have a link or links that would explain it?  I did a google just now and the forum for it seems complicated to pull the details out of.

It looks like it depends on low level antibiotics.  (That's been done before with some success.)  I'm allergic to most antibiotics, so I'd wait to learn much more before trying something like that.  (Allergic reaction predates the CFS onset but probably related to the CFS.)  

I have improved over time, but I'd like to learn more about this MP.  It's funny the local CFS group is run by someone who keeps us up to date about a lot - but hasn't mentioned this.  Guess it doesn't interest her.

I think I didn't understand what you are saying about alternative treatments.  Everything has worked for you?  I've found many of us have gotten worse on some stuff, improved on others, but sometimes the worse has been permanent for some people.  So, I always recommend caution.

Thanks for the ideas!

[PlateletGal]

Hi Curls,

I also have CFS --- I'm actually on a research protocol right now called the Marshall Protocol. I've done many of the alternative treatments and had nothing but positive outcomes.

Good to see you here !

[Curls]

Just noticed that last post of your's.  You were describing CFS more than FM, which are very closely related but FM has much more pain and usually less fatigue.  How'd they rule out FM?  You don't have the pressure points?  But you could still have CFS.  

[Curls]

I've had CFS 10 years.  Yep you've got CFS or FM.  It's important to rule out anything else that is treatable in a different way, so please do keep following up on that.  However, you are describing an absolutely classic case particularly all the smaller sounding symptoms that just sound odd.  (Like the not swallowing properly has a name and has to do with poor autonomic system communication to the smooth muscles.)

There's so much I could write and I don't have time to do it all, so I'll cover a couple starting points.
- Often dizziness is caused by a dysautonomia such as Neurally Mediated Hypotension and low blood volume (by total mass, the usual tests are normal).  It's worth a google search on this.  (Dr. Rowe at Hopkins did the original research in this.)
- Long term recovery usually is best is good care is given in first few years.  Be careful not to overdo, even though nothing seems like it's "overduing it".  Let your body do it's best for you by honoring it's rather odd limits.  Take sleep meds if they give you restful sleep.  Ambient has a new version that might work better for you.  Drink lots of fluids to offset the reduced blood volume.  Those people hospitalized in the first few weeks and given saline IVs have better prognosises.  That will be difficult to get, but keeping super-hydrated is the next best thing.  Keep legs elevated to whatever extent feels good and start to notice the body signals that tell you what works for you
- Good names to google on:  Dr. David Bell, Dr. Alan Pocinki, Dr. Charles Lapp, OFFER clinic in Nevada.  CDC has updated it's website.  The Cfids of America organization is great and is one of the prime US organizations and their site has stuff on it.
- Treatments vary from person to person and they help with symptoms.  Early on I noticed that about 70% of people improved quite a bit by modifying their diet.  Some eliminated allergins like milk, eggs, soy, corn, tomato.  Others did yeast diets, or macrobiotic (which eliminated milk, eggs).  The list went on and on.  When people said what worked best for them it was usually diet change of some kind.  So I tried it and big difference for me.  It's the flip side of being sensitive to medications, and environmental stimuli.  You're senitive to other stuff too.
- The immune system doesn't function correctly with CFS.  As a result you can have elevated titers to various illnesses like mono and some of your symptom load can be from that.  That's why treatments that help bring those down can help.  What treatments - none officially.  I introduce this idea so you will recognize it when you see it in the alternative arena.  High dose Vit C is one thing that can cut down on viruses in the system, but you have to be careful because you can get dependent on the high dose.

Psychiatric care
- It's very helpful to get interviewed from psycologist.  I went to teaching hospitals co-committent medical and psychiatric clinic (for people with depression after heart surgery, etc.).  They declared me non-psycosomatic and I used it to stop inept doctor's in their tracks after that.  There is some evidence that long term low grade emotional stress can made a body that's suspectible to this, come down with it years after the stress.  However, it's a physical illness.  Lot's of illnesses are impacted by prior stress.  Low dose anti-depressants do help some CFS patients because they have a side effect of increasing blood volume.  This has lead to some of the confusion of practictioners.

Alternative treatments.
Medical treatments are limited, and so many folks turn to alternative.  One lesson I learned the hard way.  I used to say "it can't hurt to try it".  Now I say "if it's powerful enough to help then it's powerful enough to hurt."  So I'm cautious about trying things and pay close attention to my body reactions and stop if it's not going in the right direction.  For things like accupuncture and body energy work, some practictioners will tell you it takes time to see a difference.  My judgement from experiences is that it takes 2-3 sessions to see some mild positive changes.  From there good things could happen.  11-15 sessions of negative or neutral is needed to fill the practicioner's wallet and that's all.

You are describing classic symptoms.  Seriously - every single one of themm fatigue, cognitive difficulties especially reading & memory, vomiting (not in everyone - tells you you are pushing), etc..  I'm sorry you aren't feeling well.  For many patients it improves from the onset state.  It's backwards from most serious illnesses that way.  Physcial exercise of intense amounts can even be one of the triggers although it's usuall a virus or an accident.  

Hope some of this gets you started!!!

[Want to feel well!!!]

Since I made my initial post I have been to the neuro and fibromyalgia has been ruled out.  I am still looking for answers, but my neuro seems to be very thorough.

Best of luck to all of you and thank you soooo much for all your posts.    

[bngmm]

I HAVE THE SAME SYMPTOMS AS YOU DO AND I GET SO TRIED OF NOT FEELING GOOD AND BEING TRIED. I HATE IT WHEN PEOPLE THINK WE ARE CRAZY I HAVE A BOOK AND I JUST HAND IT TO THEM. I AM GOING TO START WEARING SUN GLASSES FOR MY EYES CAUSE THEY DONT FUCUTION RIGHT AND GET VERY BLURRY

[PlateletGal]

I've also had those killer headaches and vertigo. I don't think people who are healthy have a clue as to what we go through.

[JUSTSOOOTIRED]

your list and mine are the same. have had a horrible time coping with the vertigo, headaches (killer headaches that put me down), and memory issues. I must say i can totally relate!!!

[PlateletGal]

I sympathize with you because I have CFS and share many of the same symptoms that people with fibro share. Both fibro & CFS are real illnesses --- I know the CDC says online that CFS is caused by pathogens.

Ignore the physicians' who don't know anything about these illnesses. There are some really good ones out there who do know about these conditions and have been successful at treating him. I know Co-Cure.org has a "good doctor's list" for fibro & CFS patients' online.

[Want to feel well!!!]

We might be in pain but we are not insane!  I keep telling the people in my life that whatever I have it is not fatal, I just need to feel more like myself.  I worked out in my garden yesterday...simply weeding...and today I am down for the count.  This is so frustraiting because last summer I was able to do 100 mile bike rides and felt just fine!!!!!

My newest "symptom" is a burning sensations...one on the top of my left foot, another on my right hip.  It gets far worse if I scratch the spots of try to stretch the the muscle.

Why are there so many like us out there with no answers???
      

[idesofmarch]

Get a good RA doctor and make sure that your thyroid is tested with the more detailed expensive test because the other will show up as normal when you have FMS> which I believe you do.  I have all those symptoms too. Also the doctors will tell you that it doesn't progress-oh but it did for me.  I had it >6yrs now and was able to keep a FT job, and keep up the house and animals care including my husbands. Now I am not allowed back to any job (by my doctors) since 9.5 months ago. I am almost into my 120 day waitng for SSD to make a desision about my SSD(SSI) claim. I barely am able to walk my 10 min block 2x a day plus 10 min. on my stationary bike.  I don't keep up on the housework very well. The meds I take is hit or miss and everything depends on how I slept, how I ate, stress levels, weather, hormones changes, who was around me, if I had to drive or shop(how stressful was it). I also have sleep apnea, you might want to get yourself checked. I see many doctors who all know me and my meds and still have trouble on what is next.  I also have a disk herniation now with a pinched nerve and I can't sleep more than a few hours at night because of pain etc. .  I get bruised and hurt easily and don't heal properly (I have scars just from a tiny rug burn or paper cuts.) My only hope is in God and His son Jesus who I know that will help me thru my trials and in the end I will have everlasting joy in heaven.  That peace and hope gets me thru the day better than any pills I have to take to treat all the symptoms of this dreadful illness FMS/CFS ETC. Don't give up you are not crazy, but some of the doctors can't fix it and would rather make you think that you are the crazy one.  Keep up the research and I thank God that your husband believes in you enough to help. God Bless

[inpain&insane]

I am also going through similar symptoms and am convinced that I have fibromyalgia and chronic fatigue, but getting the doctor to see that is impossible.  I have taken a medical leave at work....I used to be a very energetic and active person, now all I want to do is lie down....either I sleep a lot or not at all...like right now.  I have most all the pain and symptoms you and Marie Mom have mention...when I took a leave of absence from work, I had told my boss that I guess I was just getting too old to do my job (as it is very physical, especially I think for a woman my age) although I am very strong, I decided that age was just getting to me....and that I needed to change positions at work....he told me it would be about 2 weeks before he could replace me and that I would have to wait....but I couldn't...that's when I just had to take a leave...I got where I couldn't get out of bed....I am in so much pain and so tired....whether I sleep or don't, I never feel rested....the leg cramps and the RLS, the pain in the whole abdomen and pelvic area is the worst.  I have started forgetting words somewhat....I even forgot my boss's name the other day to tell my doctor...I was so embarrassed....I've even said before I knew about FMS that maybe I was going into early stages of altzheimer's disease....that has scared me....and now I feel it is FMS instead.

I have a retired physician friend and health guru who used to be the team doctor for the Minnesota Vikings!!!...(Dr. Brooks lives in a different state than I do)  Anyway, He is sort of doctoring me from a distance.  He has recommended a Vitamin B complex, multivitamen for women, a daily water and vinegar mixture and suggested that I obtain a stationary bicycle or low impact excercise eqipment...Someone gave me a Gazelle by Tony LIttle....It is low impact and actually fun to do....I've only been doing this for 5 days, but I am willing to try anything if I could get well......let me know if you want to do it to and I'll tell you about the vinegar mixture....and any other instructions......these are "suggestions" you know, since he is retired....He actually retired to go into the ministry and is a wonderful Christian man....anyway. let me know if you have any questions....kathryn

[luv coast]

Your not alone...10 years ago I went to the doctor for chronic fatigue and I wanted some lab work done I thought for sure I had cancer or some kind of disease that was making me feel so bad , what else could make me feel like that ...Lab work came back good ...she said I must be depressed because I was a mom of 5 children therefore to her knowledge that was my problem depression, and that I should go see a funny movie, buy myself flowers...I said how can that be I've been a mom 17 years now...well 10 years later I'm still trying to get answers, although 2 1/2 years ago I did have a positive ANA test...once I got that result my doctor said we have to wait  it out and see what symptoms develop in order to determine what disease I may have...well I seem to have alot of the Lupus symptoms as well as the Fibromyalgia symptoms at this point I want to have test done to start ruling out what I don't have and I will not stop until I get some answers... I thank God for having these resources because I now know so much more about what test to have done ...And I can be in partnership with my doctor because really that 10-15 min with the doctor you will never learn about what names of the lab work your doctor is ordering and what each test is for I learned alot about what a titer is, I want to thank everyone for sharing about their gourneys as they go through their battles to get their diagnoses I feel for you all as I am on the same journey

[Want to feel well!!!]

Yes, thyroid test was done and it was fine.

It seems as though the more information I read, the more confused and baffled I am.

Thanks for the info!

  

[MarieMom3]

Hi! I am on many different types of medication.  I take 2 xanex, and 1 tylox at night to get to sleep and for pain.  The xanex also seems to help with the itchy feeling I get at night.  I have been on Lyrica for almost a year ... it has helped quite a bit with the tingling, numbness and stabbing pain in my feet, legs, arms and hands. I really felt much better on a higher doseage of lyrica.. but it raised my blood sugar for some reason.  I take 2-50Mg pills a day right now.  My symptoms change quite a bit.  I will have a day that I feel really well and try to get a lot done and then hurt for the next couple of days.  I have a dull muscular/ deep tissue- type pain and also some joint pain.  I seem to hurt mostly in the morning and at night.  Has your doctor checked your thyroid, yet?  It can also cause a lot of these same symptoms... Hope I helped some.

[Want to feel well!!!]

Thank you for your response.  Are you on any medication for fibromyalgia?  Do you use sleep meds?  In the past my doctor has prescribed sleep meds for my insomnia, but I stopped taking them.  At that time my doctor was not investigating what was happening to me.

Once I get a diagnosis, I would love to go back on sleep meds!  Lunesta did help me get a good night's sleep, but one of the side effects is a metal taste in your mouth, and I did not care for that.  Ambien was good for me but I talked in my sleep and would wake up my husband.  Now I toss and turn so much that I have started to sleep in my art studio on a futon so at least my husband can get some sleep.  Over the past 5 months I have been to the extremes with my sleep...eitther I fall asleep at the drop of a hat and could sleep for 12 hours, or I cannot sleep.  

Do your feet hurt only when you walk or all the time?  Do your symptoms change day to day or even hour by hour?

Hope you are doing well today.

[MarieMom3]

I have been diagnosed with fibro and have been trying to handle it and the multitude of ever changing symptoms.  I have most of the symptoms that you've listed also.  I think the only way a doctor can give you diagnosis is to start ruling out what you don't have and then they give you an educated guess for the diagnosis.  It seems like everyone has varied symptoms and they tend to get better and then flare up.  I am having trouble sleeping and dealing with the pain in my feet, legs, hands and arms.. at the moment.  I really feel for you and hope you get the correct medical treatment for your problems.  Let me know how things go for you..