Discussions By Condition: I cannot get a diagnosis.

fatigue, widespread pain, digestion issues. Please help me!

Posted In: I cannot get a diagnosis. 40 Replies
  • Posted By: stonezeppelinpilot
  • July 15, 2008
  • 05:10 PM

For over three and a half years I have been experiencing constant pain and fatigue. Often times, I will become so tired in the middle of the day that I start yawning continuously and have to lay down. My whole body aches. My muscles become sore really easily. On and off there has been blood on the toilet paper after I wipe along with an extreme itch. I had a colonoscopy done. They found a few erosions in the ileum which they took a biopsy of. They never called me back though. I am always thirsty and I urinate a lot. I have loose stools almost every day. Diarhea quite often. It seems like my digestion goes too fast. Sometimes I see undigested food in my droppings. I have pain just below my ribcage. I went to the chiropractor and they found that my spine was really crooked. I think it was due to bad posture from leaning over because my guts were hurting. My lower legs and my feet are always numb and my feet are cold right now even though it is summer. I have been considering suicide for awhile now. This is making life really hard. Please, for the love of god, help me! What should I do?

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40 Replies:

  • Have you been tested for anemia, or chronic fatigue syndrome, or adrenal fatigue syndrome. You have some symptoms that sound very similiar to these disorders. You should check into them, or ask your doctor to be tested. Don't give up. I have had lots of pain lately, most of it is caused by stress, even the fatigue could be a result of to much stress. As far as the blood on toilet paper, I wouldn't worry unless you have really dark stools, or lots of blood. Otherwise a couple drops could just be caused by forcing yourself to go. My biggest problem as of these last few monthes have been increased heart rate at about 100 to 110, with occasional rapid heart beats, and also when I lightly exert myself my pulse increases, but never returns to normal rythym. So just know that many other people have these problems, I hope this has helped some, and I wish you the best of luck with a diagnoses.
    Anonymous 42,789 Replies Flag this Response
  • bump bubump
    stonezeppelinpilot 6 Replies Flag this Response
  • Hey there Stonezeppelinpilot,I was drawn to your post as I too have extreme fatigue along with a multitude of other symptoms that just don't seem to fit any medical diagnosis that my General physician and a sleu of specialists have come up with. I too have digestion and bowel problems. I fluctuate from constant diarrhea at times to total constipation for days. I have been told I have IBS (Irritable Bowel Syndrome). My skin itches to the point where I scratch it off! I've been told that is called folliculitis (inflammation of the hair follicles) and dermatitis (dry itchy skin). I have issues with my sinuses and several common allergies. I can't heal my acne no matter what treatment I try! I feel like a high school kid! I have major anxiety, which I never had before, and I have no energy/desire to do things that I once enjoyed. My vision gets blurry at times and I am prone to migraine headaches. My heart palpitates and I am often short of breath. I have constant muscle aches and cramps. My feet and elbows are always dry. I have an underactive thyroid and have been told I am now pre-diabetic! As a result I have become depressed and am on medication (Wellbutrin XL). Most of what you described sounds like it could be diabetes and/or depression. Depression is a common result of being ill all the time. So-called "Clinical Depression" causes many physical symptoms that no medical test can actually detect. Have you had your blood sugar levels checked?That said, it really concerns me that you mentioned having suicidal thoughts. Since you just posted a day or so ago, I was hoping to be able to help you. I was so concerned for you "Stonezeppelinpilot" that I called a suicide prevention hotline to see how I could help you. They urged me to have you please call them (see below) and wanted you to know that it is free and fully confidential. They can help you deal with those thoughts and possibly offer you suggestions or a referral to get some medication for the psychiatric effects of our debilitating condition. I am not sure where in the world you are located, but if it's anywhere in the United States, here is the information:National Suicide Prevention LifelineNational 24-Hour Hotline(800) 273-TALKPlease follow up by calling them and keep us all posted on how you're doing. You are not alone! There are many of us suffering from autoimmune disorders that seem to be slowly breaking us down. Don't give up on yourself. Think positive and try to keep your head up.
    Anonymous 42,789 Replies Flag this Response
  • Thank you both so much for your concern. Don't worry, I am not suicidal. I have been, but I am over that. I have a lot going for me right now. I want to get better so I can focus more on improving my life. I know what depression is like, that comes and goes. Let me tell you, it is much worse when I am depressed. But I have gone through extended periods of time where I wasn't depressed and was quite positive but the weight is never lifted. I haven't been tested for chronic fatigue, I didn't know you could. I thought it was just an elimination thing. That's kinda what I'm thinking I have since it hasn't gotten a lot worse or better over the years, it just goes up and down a bit. I've had a lot of blood tests done. I think probably they would have checked out my adrenal function by now. But maybe not. Worthless doctors. Ok, so what next? Is there life after cfs? I've been reading about the marshall protocol which has mixed reviews. Maybe I'll give that or some other one a whirl if I can summon up the energy to do so! Best of luck to you two as well! Peace,J
    stonezeppelinpilot 6 Replies Flag this Response
  • forgot to add that I have had my blood sugar levels checked
    stonezeppelinpilot 6 Replies Flag this Response
  • I think I've finally found our mystery diagnosis!Lyme Disease! Have you heard of it?It has always been believed to only be transmitted by a tick bite, but there are researchers in Lyme Disease who are convinved that it can then be transferred among humans!After over eight years of despair, (and being called a hypochondriac) I think this is finally going to be my diagnosis!I took a test at the lab today called a Western Blot test.It tests for antibodies to the bacteria that causes Lyme disease!I'll let you know the outcome of my bloodwork as soon as I get it.The exciting part is that there is a really good prognosis after treatment!It seems to be curable for most people depending on the stage and extent of co-infection due to immune deficiencies caused by the bacteria.See these links:http://www.ilads.org/burrascano_1102.htmhttp://www.samento.com.ec/sciencelib/4lyme/Townsendhowens.htmlhttp://cassia.org/essay.htmhttp://cassia.org/history.htm#diagnosishttp://www.suite101.com/article.cfm/lymedisease/110988/2http://igenex.com/Website/
    Anonymous 42,789 Replies Flag this Response
  • http://www.whale.to/m/scott7.html#IV_-_COVERT_TESTING_OF_OTHER_DISEASE_AGENTS_ here is information on what causes CFS. I had CFS and Fibromyalgia. I am now symptom free thanks to BioSET therapy!! mommy cat
    mommy cat 1,654 Replies Flag this Response
  • Get tested for celiac disease. Try here: http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/
    aquila 1,263 Replies Flag this Response
  • lilcandice... If it's not Lyme then tell them to check for chronic fatigue syndrome. The symptoms are very similar and actually overlap. There are only 2 labs in the US that test appropriately for Lyme. Bowen-FL and IGeneX in CA... If you didn't have your test done by either of these labs, chances are you could get a false negative. best mommy cat
    mommy cat 1,654 Replies Flag this Response
  • Great Advice given here!!Just wanted to add you could have other tick born infections, besides lyme. The tests are not 100% reliable. The cdc guidelines are too strict, cause the bacteria affects us all a little bit differently..Go to www.lymenet.org for more help.Good luck, ~~JerseyLymie
    Anonymous 42,789 Replies Flag this Response
  • Thanks mommycat...I am still waiting for my IGg and IGm antibody lab result tests from Quest Diagnostics here in California.I have read all about IGENEx and plan on pursuing lab tests through them if these do not show positive results.My GP is now considering Fibromyalgia as an explanation, but I am convinced of Lyme and/or Babesiosis. Have you guys heard about Morgellon's? That's another possibility. Google it or see Wikipedia.I'll keep you all posted.Stonezeppelinpilot what's going on with you?Thanks for the insight mommy cat.Best of luck to you all with finding a diagnosis...Stay well!-lilcandice002
    Anonymous 42,789 Replies Flag this Response
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  • lilcandice... funny you should mention Morgellon's. Seems I have had it since 1994 but just found info on it about 8 months ago as I was researching chemtrails. when I saw the photos of the Morgellon's sufferes I thought "Gee, that looks like my face" I bought a microscope and have been looking under it ever since. Regardless of what your diagnosis is, please consider NAET or BioSET as a way to relieve symptoms. Someone in this forum recommended it to me last year. If it hadn't been for her and my practitioner, I would be dead. I had CFS and Fibro but I no longer have either. All of my major organs and glands were shutting down and no doctor could explain to me why. That is when I found the info on mycoplasma. When I did a search of CFS and Fibro causes, I found pages upon pages of mycoplasma info. All symptoms have been resolved:D I wish you the very beststay well and stay informed mommy cat
    mommy cat 1,654 Replies Flag this Response
  • I had a colonoscopy done. They found a few erosions in the ileum which they took a biopsy of. They never called me back though. I myself have found that it is always best to follow up ones tests even if the doctor dont ring. You should give them a ring to check that the results of the test were okay. You need to know if IBD or crohn's disease (crohns most commonly affects the ileum) etc has been ruled out. I have loose stools almost every day. Diarhea quite often. It seems like my digestion goes too fast. Sometimes I see undigested food in my droppings. this issue can also be caused by irritable bowel syndrome (IBS) or food intollerances/allergies........................ Im glad to hear that you've had diabetes ruled out.. you do have several symptoms which could point to that. Another issue which can cause many of your symptoms including the need to pee a lot and the bowel symptoms etc is chronic fatigue syndrome (CFS). http://wwcoco.com/cfids/bernesx.html i strongly suggest if everything else has been ruled out, that you find someone who is used to seeing CFS patients eg someone who specialises in CFS in case it is this. (try asking about to find out eg ring local CFS or FM support group or try http://fmcfsme.d-3systems.com/doctor_database1.php or http://www.co-cure.org/Good-Doc.htm ) As one with CFS herself, im not sure if that is your issue or not as thou you do mention many CFS symptoms.. you also dont mention some very normal ones to have with that illness eg brain fog/memory problems, headaches, sleeping issues and dont say that your fatigue is post excertional. So hence CFS may not in fact be your issue (im wondering if all your issue could be stemming from some kind of gastro issue??).
    taniaaust1 2,267 Replies Flag this Response
  • I've had a lot of blood tests done. I think probably they would have checked out my adrenal function by now. But maybe not. ive found that doctors rarely will check ones adrenal function so dont assume they've done that. My own countless doctors have only just done that, only when i asked them about doing that... (after i've had CFS for 11 yrs). Ok, so what next? Is there life after cfs? I've been reading about the marshall protocol which has mixed reviews. Maybe I'll give that or some other one a whirl if I can summon up the energy to do so! i know many who've tried the Marshal protocol and it only helps very few, it's a severe treatment plan and very very hard to stay on. Some i know are now suffering from worst side affects after following Marshal protocol and found it didnt work for them. Some have been left with Addison's disease (which is life threatening) after being on Marshal protocol. The Marshal protocol site is very bias, they ban members who are following the protocol and having serious issues with it with the side effects etc. If you find out you do have CFS (which as i state in my other post to you, i myself are not sure you do have) and still want to do marshal protocol after all i've just said to you about it. contact me at tania_selth@yahoo.co.uk and i'll link you up with ones who have tried it and are still suffering the consequences of it! (i currently are in contact with two different ones who are now having to be treated for what the Marshal Protocal has done).
    taniaaust1 2,267 Replies Flag this Response
  • Eh, I am going to try colloidal silver. Anybody try it?
    stonezeppelinpilot 6 Replies Flag this Response
  • Stonezepplinpilot, Love your name, I can't see your first post because they show the latest first. Becareful about colloidal silver -- you can build up heavy metal posioning. It can settle in liver and cause damage, especially if liver is weak right now. I have to agree with a few of the comments. You appear to have digestive issues that could be tied to IBS, celiac, chrones (sp), endocrinology, or metabolic issue. You say you have had lots of blood tests done. Do you have copies? If not, get them. All of them. Take ownership of your issues. You need to look for trends. Also, the doctor may not have run full panels if initial panels showed nothing (this is an insurance issue). However the answer may have been in the full panel. Once you get them, let us know if there are readings that are out of the norm or almost out of the norm. Also let us know what they really looked for. Next. Tell us your diet. How much protien do you eat a day. Next how much gluten do you eat (wheat, oats, barley,). This may idicate issues about celiac. How much sugars, fats. Your problems appear to be physical and organic. So I recommend you analyze your diet --keep a log for the next week. Get all your blood tests --know what the doctor has and has not looked at. For real. No offense to those that talk about the CFS/FM but, I use to be on the board in a large city and worked with doctors on research. Your diarrhea is not a common symptom. I think there is other things to rule out first. Now as a result of the root cause you may be extremely exausted, etc. But think something else is causing the fatigue, not the fatigue causing all the other issues. The same with Lyme disease. Unless you are living in one of the key states that has the Rocky Mountain spotted tick and spend time outside, and such, this is probably less of root cause. But only you know what you do, so you have to answer that. Lyme disease has become the soup dejour for some doctors just as CFS/FM --it is easy money for them, but ***l for you. You never get better because you never address the root cause. I appologize to the posters about those diseases or disorders--doctors tried to hang them on me. I refused to accept because mine was much deeper. I had IBS and gluten problems but not celiac. Ended up OTC --ornithine transcarbamylase deficiency. I can't digest protein very well. Gluten is protein. Both disorders affect the little hairs (can't think of right name) in the colon) which is why symptoms are so similar. Except celiac patients do not have hyperammonia which is toxic to brain and can cause comas and death. This is why I recommend when you are at whits end, be sure and get all your lab tests and such. Look at them. Look up on net and learn what they say about the tests. Ask more questions. Keep pushing for answers. Never give up. Hugs
    Abbydoodle 138 Replies Flag this Response
  • You may want to research OI (Orthostatic Intolerance) Here are SOME of the symptoms: Excessive FatigueExercise IntoleranceRecurrent Syncope or Near SyncopeDizzinessNauseaAnxietyTachycardiaPalpitationsVisual DisturbancesBlurred Vision Tunnel VisionGraying OutTremulusnessWeakness - most noticeable in the legsChest DiscomfortShortness of BreathMood SwingsMigraines and Other HeadachesGastrointestinal ProblemsHope this helps =) Best wishes and feel better =)
    aliceanna 41 Replies Flag this Response
  • No offense to those that talk about the CFS/FM but, I use to be on the board in a large city and worked with doctors on research. Your diarrhea is not a common symptom. I think there is other things to rule out first. Now as a result of the root cause you may be extremely exausted, etc. But think something else is causing the fatigue, not the fatigue causing all the other issues. sorry abby i hope you dont mind me responding to that part of your post but ive been involved in CFS support groups etc for a real long time now and know 100's with this condition, (ive had it for 12 yrs, fully beridden for 9mths with it and are on disability now with it). From my own experience of knowing so many with it, i have to say the diarrhea symptom IS very common with it... To back up what im saying... below are statistics of certain symptoms with CFS (statistics are based on studies down by world experts in this illness). http://wwcoco.com/cfids/bernesx.html From Katrina Berne,Ph.D., Running on Empty, The Complete Guide to CFS (CFIDS), 1995 pp. 57-60. The following list of symptoms is grouped into three general categories with approximate percentages of PWCs who experience them. These percentages are based upon information reported by Drs. Bell, Cheney, Fudenberg, Goldstein, Jessop, Komaroff, Peterson, and two surveys (Kansas City and Phoenix). Grouping symptoms into categories is done for convenience. It is likely that all symptoms are related to neuroimmune dysfunction.General or Physical Symptoms: Fatigue, often accompanied by nonrestorative sleep, generally worsened by exertion: 95-100%Nausea: 60-90%Irritable bowel syndrome (diarrhea, nausea, gas, abdominal pain): 50-90%Sensitivities to medicines, inhalants, odors, and foods: 25-65% The food intollerances which so often develop in CFS (esp after one has had it a while) very often causes diarrhea. I myself get diarrhea from it (most often my IBS manifests thou as constipation.. but if i eat foods ive now developed intollerances too eg dairy or at certain times of the month, i get diarrhea). I have been fully bowel incontient at times due to it (this is all from the CFS and what it's caused) so hence have had to wear nappies at times.....................i certainly agree with abby thou with that i dont think the poster has CFS, (Im saying that based on what i know about this illness and the normal symptoms of it which the poster hasnt got).
    taniaaust1 2,267 Replies Flag this Response
  • Off subject for the poster sort of, but discussion about CFS/FM. I was here in H-Town when all the organizations started kicking off. Was editor of newsletter and kept in touch with all resources so the organization could be kept up to date on what was happening locally, nationally, and internationally. We had doctors doing all sorts of trials. Some trying to paint your to green to see if it would work (only illustrative), etc. I received the label of having such a disorder. I had an employer fire me when I was given this DX. For a while I wallowed. My husband and I answered the cities hotlines for problemed members. I won't go into the silicon implant scare, it made a mess of things. Watching all these people pass in front of me, many bearly walking made me ask self many questions and asking hubby and God lots more. I spoke with learned collegues of the day of the late 70s, 80s, and early 90s. I tried many medicines. If anyone ever comes at me with a magnesium shot again ...they will never catch me. Those suckers burn under the skin and you can' stop it. I had every soup dejour for FM.MS. They tried to prove lupus, thyroid, arthritis, any and everything they could think of. The future was bleak. That is when learned about and realized that CFS was more that what was being marketed.I had to talke a walk within as well as without. I started to look at other points and areas when I realized that CFS was just a means to the end for a diagnosis. It is not the final diagnosis. Must go to sleep amy falling into screen will pickup to morrow.
    Abbydoodle 138 Replies Flag this Response
  • I started to look at other points and areas when I realized that CFS was just a means to the end for a diagnosis. It is not the final diagnosis. Must go to sleep amy falling into screen will pickup to morrow. abby.. im glad that you found out that you didnt in fact have CFS! esp since currently there is no real cure. Unfortunately the statistics are that a quarter of ones which are diagnosed with having CFS are later on in fact found to have something entirely different. So 25% are misdiagnosed with it! Many doctors use it as like a waste basket diagnoses!! when they cant find anything else wrong. It shouldnt be diagnosed in that way, the canadian CFS diagnostic criteria are recongised about the world as being the best diagnostic criteria for CFS, (the american one ends up having more people who may have things like just major depression in it) and i think without exactly meeting canadian diagnostic criteria (not just meeting the symptoms but also having a very efficiant doctor rule everything else out) and also having "back up scientific evidence" pointing towards CFS, that this is probably the current diagnoses.. i dont think without all that, anyone should accept this diagnoses. Gene testing for CFS is on it's way.. 88 abnormal genes have been now found in CFS people and they can know what subgroup of CFS one falls into (eg what group of CFS symptom complex you are in) just by gene testing. CFS is certainly a proper illness and final illness in it's own right and once diagnostic tests go public (give it another 5 yrs and i do think these tests will be public by then), there will be far less confusion and misdiagnoses happening with it................ by CFS scientific back up evidence which points towards this illness, i mean common CFS findings on certain tests. eg in my own case i have the following common CFS findings which also back up that i have CFS. I have postive rombergs test, hyper-reflexia on tesing my reflexes, sympathetic nervous system dysfunction showing up on certain tests (this ties in with the hypothalmalic/pituatuory/adrenal dysfunction which often happens in CFS), abnormal EEG brain scans (which show a common CFS finding), low cortisol levels (one third of CFS women have low cortisol levels.. mine are out of normal ranges.. very low), POTS (demonstated with abnormally raised heart beat on standing). If doctors do the various recommended tests that are recommended for CFS patients once they believe that is what one has.. one should find some matching abnormalities. If all doctors did this, there would be far less mistakes!
    taniaaust1 2,267 Replies Flag this Response
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