dear needssomehelpplease, also you may want to see a vascular doc. thoracic outlet syndrome is what i was diagnosed with due to both arms going to sleep while i was asleep.  typically an extra rib is the cause, with cure.  i wasn't this lucky, actually i am considered the rare and unusual one in a million who develop this syndrome for no explainable reason.  treatment is physical therapy in such case.  but an extra rib can be removed and one could be symptom free.

This may sound far too simple but here it is.

Running daily: Do not push yourself to far too quickly.  Run in accordance to your abilty and conditioned level your don't want to injure yourself. Always stretch spread your legs  touch your toes bend your right leg to your thigh and left leg do the same.

Monday light run not distance but rather time, ie: 15 minutes one way 15 back.

Tuesday same only make twenty mimnute cycle, 20 up 20 back

Wedesday same as Monday (repeat this cycle)

You alternate, easy run day follow by hard run the next day. You take 1 day off out of seven no work out.

As you increase you indurance you then increase your times always maintaning easy day hard day scheduled to allow your body to recover. It works and takes much discipline. Good Luck.

Geez this place is addictive...I'm back roaming around again.  Anyway, glad it doesn't sound like scleroderma.  I didn't want to say, but it's wouldn't be my illness of choice (for the reasons you mentioned).  Any luck figuring out what's going on yet?  If so please post...!  I saw a post near the top about the Med forum looking for a doctor to respond on this forum, so it may be worth checking in from time to time.  Have you found any doctor's willing to try medications on you without a diagnosis, just to see from the reactions if it starts to narrow it down?  Well, still wishing for you a diagnosis that's straightforward and easy to treat!  I still think a good geneticist might be very interesting (I went to Howard Levy at Hopkins.  He WANTED ALL of my past records, by the many inches full).  

If you do go alternative, one thing to check out is Shamanic healing:
http://www.shamanicteachers.com/pages/5/index.htm
It's the continuation of the ancient healing techniques used by many cultures around the world (which coincidently all developed to have a number of features in common).  It seems strange and just because someone says they do it, I wouldn't assume they have skill.  However, it is pretty safe and as I've done it with a local group, there have been too many "coincidences" a number of them with healing to not take notice.  The list I pointed to (without going into the whole explanation) are people who will be quite good and honest.  You could try one (for one session) to ask questions like "what do I have" and "where do I go for help".  Other than the money, it will be at the least amusing, and it a nice relaxing meditation experience.  It often suggests conventional medicine, so it's not kooky that way.  (I've been doing it for three years and have seen spontanous improvement where I didn't in the 6=7 years before, and besides it's a nice meditation. So that's what my connection has been.)  I'm not trying to push anything, I just know how frustrating it is when you don't have answers.
  
Cheri

Hey there. Thanks for the interest. My issue is still steadily evolving, much as it has been for a while now. It is not scleroderma. Contrary to jamjams commentary, I do not have the symptoms of that. Which is good, because it's incurable and very debilitating and would not choose that one. I am still in the midst of tests to check my stomach issues, I will keep checking in. The muscle pain and stiffness, sensitivities of skin, shakiness, sleeping limb, etc are all still haunting me. I am trying to ease into an excerise program to try and balance my body to see if I can at least regulate. Looking at my records I don't think I got the tg and tpo tests, so i am considering getting those done. I'll update later. Glad to hear you're feeling better.

Hi, Did scleroderma work out?  I'm feeling better from what brought me to this forum (surgery at the ovarian cyst forum and curiousity since my CFS is much more of a problem than a short term surgery).  Just wanted to let you know that I wish you success with your medical problem...  
Cheri

I think myproblem's comment is right on target: you have the symptoms of Scleroderma. Go to a Rheumatologist.

Hi,
If you don't have some sense that your mind isn't thinking as well as you're used to working, then it's very unlikely to be CFS.  The sore throats and headaches are far from universal in CFS.  It almost always involves at least some sense of fatigue too that sleeping it's easing enough (and it's usually physically painful levels of fatigue).  FMS is a little different and the fatigue and cognitive problems can be barely present in a few cases.  But it sounds like, you're guessing right that it's not a good fit.  

(For anyone else reading this - one of the most striking things I learned about CFS is that it is a distinctive illness that can be distingished from other illness or random sets of symptoms, so it's not the last ditch effort, wastebasket diagnosis I always assumed it was...  Doctors who treat it agree that give them an appointment with a patient and without any tests they can tell you if you have it.)

Since modern medicine had little to offer me, I tried tons of alternative treatments and listened to lots of other people who have also.  One lesson that took me a while to learn and I wished I'd realized sooner I summed up for myself in a saying.  "If its powerful enough to help, then its powerful enough to harm".  I used to say "what the heck, it can't hurt, I'll try it".  What I finally realized is that many of these treatments do have an impact, and that's why in a few cases they are able to help.  Meanwhile, the treatments aren't well monitored, the practicioners are well meaning but not neccessarily as thoughtful as I am or all that skilled enough as they declare they are, and treatments haven't been studied and developed until there is a true protocol for when and what to apply.  The result is that most treatments have tremendous  success with a couple people, and others just spend money on it.  This potential for harm, especially complications with what's already working well in your body, holds true for herbs and food supplements and teas too.

The tricks are

- Finding treatments that seem like they might work for you on a gut level to see if you'll be the 1 or 2 persons of success.

- Trying things like acupuncture for 1 to 3 treatments per practioner.  If you don't see at least some improvement in that amount of time, it's unlikely you will see it in 15 treatments of $1500.  If you see some, then that more may lead to more.

- Ruling out most treatments or practitioners because they are great sales pitches but on close scrutiny they don't hold up.  It's so hard to rule out most, but most specific situations aren't worthwhile - which leaves energy for seeking what will work for you.  Most practitioners are well intentioned, so it's not as simple as picking out shishters.

- If you can run stuff by your doctor.  Mine has explained how something was working but so releasing lots of adrenaline so of course I'd feel better...  Another example, lympth drainage massages might be great (I haven't tried them) but if you have cancer it increases it's spread and is contraindicated.

- Many herbs and supplements are blood thinning and so I've suspected they help so many conditions because more vicosocity helps lots of stuff.  For herbs/supps buy reputable brands because other brands can have less active ingredients than listed and contaminants.  (FDA doesn't monitor them.)

- Lots of autoimmune condition symptoms improve by changes in diet, elimating problem foods, or following one of the many diet suggestions out there.  The diet has nothing to do with the condition, so there's not clear reason why it works so often.  (The condition doesn't improve, just the symptoms, sometimes to the point of gone.)

- Logging symptoms against treatments can be invaluable to track what's really working.

People really do improve with alternative treatments so they are worth exploring.  It's just important to trust your gut, and not spend a lot or money or time on what isn't working.  Also, to be leary if your body is feeling worse not better.  (You'll know if you are having a 'healing crisis' or just a bad experience.)

In the end of I've done very little because so much worked poorly or did little for me, or didn't last long.  What has worked well for me are energy work on intention (mediation, prayer, I do something called shamanic drumming) which by the way double blind university studies shows do impact health.  But, that's not the right for everyone.  Massage, reiki and the like tend to feel good but not last.  (And some people have miracles.)  Acupucture varies greatly, but don't fall for the "it takes 15 treatments to start seeing something".  There are two schools of acupuncture (4 & 5 element plus variations) and one might work better for you than the other.  If a strenous and kooky diet works, try leaving out just a couple of main foods like dairy, eggs, or sugar and see if that works equally well but with less effort.

Well, I've rambled on, but I hope my experiences can be helpful to you in the maze of alternative treatments and save you some of the effort I went through.

Good luck.  If you have questions on anything in particular, post it and if I know something I'll tell you...

Lots of success!!  
Cheri

Thank you all for your comments. I see many people here are in the same boat but a different part of the lake. Regarding CFS I feel is one of those things that you are diagnosed with when doctors really don't understand what's going on [like fibromyalgia] so I'm reticent to accept that, although I will definetly look further into it. Many of the symptoms listed on sites for that I don't have, such as sore throat, headaches, memory issues, poor sleep, etc. and I will look futher into the other thyroid issues, as well as calling that medicine man in South Bengal.

Has anybody tried any alternative medicine practices to any avail, such as tai chi, reiki, acupuncture, power of the mind, etc? I have not had much luck with acupuncture but I feel at this point I might be the only one that can help myself.

Thyroid disease is a good bet. Add TSI antibodies to tests above. You symptoms are classic right down to the peripheral neuropathy. I even had bil. carpal tunnel repair. It was GRAVES causing my problems along with B-12 Definciency.
                              Don't Give Up, J

I forgot to mention (do I ever remember everything the first time?)... the extremities falling asleep, sensitive skin, and sensitive to touch (feet) are all symptoms I've had with the CFS and are fairly common in different degrees of intensity.  The extremities thing is called something like paranthesis.

If the CFS doesn't sound right then it's good to rule out.  I was puzzled by your comment of chronic nature since CFS can take the course of worsening, steady, slowly improving, or   intermittent crashes so that's a hard point to, well, pinpoint.  When I first came down with the CFS post-virally, I gave my doctor an argument that I didn't have it because I was so very sick with all sorts of odd symptoms and it wasn't just a low level of fatigue I was feeling.  (I could barely move from muscular fatigue, had intense roaming and systemic pains, cognitive confusion, etc.)  I just don't want people to be misled by the name the way I was.

Anyway, maybe poking around one of the other ideas will lead you to the answers you deserve!!
Good luck,
Cheri

Thanks for the suggestions. I think I can rule out CFS due to the chronic nature of my symptoms, as well as the other dissimilarities. I will poke through the NIH website as well. I recently also got a positive test for IBD, which basically means Chrone's or Colitis. However Chrone's has been ruled out and I do not have many of the standard Colitis symptoms, so I am thinking this is a secondary artifact of a bigger problem, instead of the cause. Considering all my  muscles feel affected, the stomach, colon, etc is just another affected muscle. This is driving me nuts.

Thought of something else to consider...

If you can find a good genetic doctor (at a teaching hospital for instance), maybe you have something rare that they can pick up on. I saw one, and he really wasn't thrown that I didn't have any family history of something similiar and did diagnose something. Also, NIH's website has information on rare illnesses. They've grouped themselves together to raise awareness since individually they get lost.

Cheri

Also look up www.cfids.org for CFS.  A lot of what you describe, especially the numbness (parathesis) can be part of CFS.  Contrary to popular opinion the illness is pretty distinctive and distinguishable from other illnesses once you get to know it.  

One concern I have of mentioning it is that since it's a rule out illness, it's important not to miss a different diagnosis by setting on CFS by default and not looking elsewhere well enough.

The easiest way to distingish it is muscular fatigue and mylasis or increased muscle fatigue 24-48 hours after exercising instead of feeling better.  Another easy to distinguish symptom is the Neurally Mediated Hypotension (whole bunch of symptoms from standing described on the website too).  Men tend to have a little less fatigue and function more with it, so it can be misleading.  

Around only less than 10-20% of people with CFS are diagnosised with it (from the CDC's recent prevalence study), so it can take years to find out.

It sounds like an autoimmune disease. Look up Scleroderma, Lupus, and Mixed Connective Tissue Disease. (You don't have to have a rash to have Lupus.) Cold hands and feet are probably Raynauds phenomenon/disease. Feelings of fullness in the gastro tract are possibly Esophageal Dysmotility. Also look up Vasculitis, as this could account for the raynauds, and the super noticable pulse. Here are some wbsites that have good info.
http://www.scleroderma.org/
http://hometown.aol.com/lindartc/index.htm#what
http://www.sclero.org/index.html

I agree diligence is key. I am starting to be more proactive.  Since the symptoms are all over the place, what you say makes sense. I am leaning towards some type of autoimmune problem. I have crossed out so many things due to not having symptoms in those areas (myopathies, GI diseases, Lupus, etc) and you're right, several doctors have tried to put me on anti-depressants. This thing is taking over my life so I can't be complacent any longer. I rarely take antibiotics so I doubt it's related but thanks for the suggestion floxie. My thyroid has been tested extensivly however I will review the tests to see if they did the ones you suggested.
Some of the symptoms I dont have however it's worth a shot. Thanks any if anybody else has suggestions I am open to them.

Have you had your thyroid antibodies tested? Your symptoms sound endocrine related (thyroid, sex hormones, adrenal gland, pituitary, parathyroids etc...).

I have Hashimoto's thyroiditis (autoimmune hypothyroidism) and my thyroid panels have always been "in range". However, I have elevated thyroid antibodies. I have many of the symptoms you listed.

Since your symptoms are not specific to a particular disease it's not a surprise that you've been given the run around. Drs often have a difficult time properly diagnosing autoimmune endocrine abnormalities until the disease has progressed to severe proportions.

Many people with autoimmune diseases go years without a diagnosis and are frequently treated for depression as the primary cause. It's very sad!

I'm so sorry you haven't been able to find relief for your condition. I would recommend having your thyroid antibodies tested (Tg and TPO).

It's easy to get discouraged but try to keep looking for answers. Is there anything specific that you feel might be going on? Have you done a lot of your own research? I was only diagnosed only because I pushed for testing and answers. I even requested a trial run of thyroid meds (my dr agreed and it did improve my symptoms).

I was tested for "everything treatable" and my labs have been mostly normal (there have been several instances when I was told everything looked great but when I got a copy of my labs I discovered my white blood cells were low or my lymphocyte count was elevated etc...lesson learned was to always get copies of my labs).

Kelly

Were you taking any antibiotics at the time?