Discussions By Condition: I cannot get a diagnosis.

Strange but not unusual symptoms

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: maggie75
  • February 20, 2008
  • 09:26 PM

Hi, I was wondering if anyone could give me some advice on some symptoms I've been dealing with for over two months.

I have Intersistial Cystitis and am waiting for test results for RA. Over the past two months I've been experience extreme fatigue, I have no energy to do anything. It takes me every last ounce just to take a shower in the morning. When I wake up after about 15 hours of sleep, I fell like someone has been sitting on my chest all night. It feels full of fluid but there is nothing there. I use my inhaler (exercise induced asthma) but it doesn't help. I suffer from pain in my right abs due to adhesion disease and the IC but lately it's been much worse. I keep having these little eposiodes that literally take my breath away they hurt so much. I get headaches all the time and I've noticed that I get really annoyed easily. I also have a lot of trouble remembering things. My brain feels very cloudy. I'll get up to get something but forget what it was so I get a drink of water so I don't feel stupid. I'm afraid to go to my doctor because I feel like I'm a pest to them. (took 5 years and many, many tests to determine I have IC, they didn't believe me and treated me like I was a drug seeker) I take morphine and Elmeron for my IC symptoms. I'm also very dry all the time. My mouth and my eyes feel like a desert. Any ideas? Thanks for any help at all. It's greatly appreciated!:eek:

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  • I don't have any help for you, but I do want to say that I know how you feel about feeling like you pester your Dr. I get that exact same feeling with the 3 Dr's I've seen about any number of health concerns I've had. They treat me as a hypochondriac when I start asking questions about problems I've been experiencing and I feel like they just chock all of my symptoms up as stress induced or anxiety related since they think I'm a hypochondriac. I don't even go to the Dr. much. Maybe 1 or 2 times in a year. However, if I start asking questions or describe ALL of my symptoms of something, they immediately tune out. It's very frustrating.
    intargc 22 Replies
    • February 20, 2008
    • 09:40 PM
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  • Have you been checked for Sjogren's yet? It can cause dry mouth and eyes.It's not normal to be having all the fatigue. It sounds like you really need to see someone about it.You may want to seriously consider getting screened for autoimmune diseases in addition to Sjogren's and RA, as they can make you very, very tired.My fatigue was found to be caused by a rare complication of autoimmune thyroiditis called Hashimoto's Encephalopathy. It's diagnosed by checking thyroid antibodies, even if thyroid hormones are okay. It gave me brain fog, sleepiness, headaches, and fatigue (these are all kind of non-specific symptoms though).They've probably already warned you that morphine can also make you real tired, and can take away your drive to breathe and cause difficulties with breathing. You obviously had a lot of pain from the IC and likely need to be on some kind of pain control, though. I just wanted to mention it in case they haven't warned you about it.I hope you get some sort of answers soon.Sorry you're having uncomfortable symptoms.
    Anonymous 42789 Replies
    • February 21, 2008
    • 03:56 AM
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  • wow - morphine for IC? That is a VERY strong drug. And elmiron has many side effects including headaches, hair loss (alopecia areata), dehydration, and others. Please visit www.rxlist.com and find out more about the side effects to these two drugs. Have you considered trying a more holistic approach to treating the IC? Acupuncture and Chinese medicine are excellent for genitourinary diseases. Very good for pain, and a better option IMO than morphine, which barely masks the pain and leaves you in a complete fog. Best wishesDOM
    acuann 3080 Replies
    • February 21, 2008
    • 05:25 AM
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  • Thanks for all the suggestions. I do take morphine because I've built up a resistance to lower dose medications over the past six years. The morphine actually helps a lot. I know a lot of people think IC pain isn't that bad. It has actually been compared to someone going through end stage renal failure or suffering from cancer. It's hard to explain but it's very difficult to function on a daily basis without some kind of help. I've tried the holistic approach but it doesn't work for me and it's really expensive. I just can't afford to keep up with it and my insurance doesn't cover anything outside Western Medicine. I'm a wealth of knowledge about my medication's side effects. I've been using them for quite a while. Love the hair loss! I know some of the symptoms are from them, that would make sense. Just lately though, I've been feeling awful and it doesn't seem to be from my meds. It just feels "different" if that makes sense. I've never been this exhausted from meds before. I cleaned my car off this morning and when I came back into the house, I thought I was going to die I was so tired. It just sucked all the energy out of my body in a matter of minutes. I'm going to ask my DR about Chronic Fatigue Syndrome. Many people with Autoimuine disease suffer from that and Fibromylagia. We'll see. Thanks again for the help!:)
    maggie75 2 Replies
    • February 22, 2008
    • 10:25 PM
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  • Like the other poster said ask your doctor if you could be checked for Sjogren's as that may be the cause of some of your symptoms. Some medications thou can cause dry mouth etc so it may also pay to do a an online search, to see if any of your meds can cause that symptom. FIBRO ISNT LYME. Thou lyme in some could be the cause of their fibro symptoms. The world health organisation (WHO) views them as completely separate illnesses. They aint the same. Keep following up on whatever tests your doctor can suggest for other things before you bother with CFS. Everything else needs to be ruled out before a CFS diagnoses is made and a CFS diagnoses is usually only made after having the condition for at least 6 mths. So at this point even if you did have CFS, no doctor would diagnose you. If all your tests thou come out negative and you are still looking for answers in 2-3 mths time, then I strongly suggest at that point to find a CFS specialist (who may think of further things which present like CFS which your doctor wouldnt think of). Also a doctor with the attitude, that you are being hyperchondric, isnt likely to listen to you and is more likely than not, of the attitude, that CFS is a mental disorder. (Most doctors are well behind times when it comes to CFS). http://www.co-cure.org/Good-Doc.htm At this point.. till all the tests have been done, I wouldnt worry about CFS. .............. Exclusions for CFS (from the offical canadian consensus document, which is what doctors there and also in Australia, are meant to go by). "It is essential to exclude Addison's disease, Cushings syndrome, hypothyroidsm, hyperthyroidism, iron deficiency, other forms of anemia, iron overload syndrome, diabetes mellius, and cancer. It is also essential to exclude sleep disorders such as upper airway resistance syndrome and obstructive or central sleep apnea: rheumatological disorders such as rheumatoid arthritis, lupus, polymyositis and polymyalgia rheumatica; immune disorders such as AIDS; neurological disorders such as multiple sclerosis, Parkinsonism, myasthenia gravis and B12 deficiency: infectious diseases such as tuberculosis, chronic hepatitis, LYME DISEASE etc; primary psychiatric disorders and substance abuse. Exlusion of other diagnoses, which cannot be reasonably excluded by the patient's history and physical examination, is achieved by laboratory testing and imaging. " (I highlighted the lyme disease for blaze..so she can see this offical medical document offically recognised by at least 3 countries I know of, written for doctors etc, points out lyme and CFS are not the same illness)
    taniaaust1 2267 Replies
    • February 24, 2008
    • 01:49 AM
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  • Thanks everyone. I know I do not have Lyme Disease. I've had every blood test done known to man except my RA test which I need to get off my butt and do. I absoutly agree that Lyme disease is not aka Fibro. Anyone with an autoimmuine disease is usually lucky enough to suffer from additional ones and Fibro and CFS are the two most common. Ever since I was diagnosed with IC almost two years ago, I've been very active in doing research on my disease as well as any meds I take. Honestly, it never even occurred to me until about five mins ago that I just might be having a flare. It's been so long, I've forgotten how much of a toll it takes on my body. Well, just have to finish my blood test for RA and see what the doc. thinks. Thanks again!
    maggie75 2 Replies
    • February 24, 2008
    • 02:02 AM
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  • I have Intersistial Cystitis quote below is from the same official medical document. Myalgic encephalomyelitis/chronic fatigue syndrome" Clinical Working Case Definition, Diagnostic and Treatment Protocols Co-morbid Entities: Fibromyalgia Syndrome (FMS), Myofascial Pain Syndrome (MPS), Temporomandibular Joint Syndrome (TMJ), Irritable Bowel Syndrome (IBS), INTERSTITIAL CYSTITIS, Irritable Bladder Syndrome, Raynaud's Phenomenon, Prolapsed Mital Valve, Depression, Migraine, Allergies, Multiple Chemical Sensitivities (MCS), Hashimoto's thyroiditis, SICCA SYNDROME etc Such co-morbid entities may occur in the setting of ME/CFS. Others such as IBS may precede the development of ME/CFS by many years, but then become associated with it. ME/CFS and FMS often closely connect and should be considered to be "overlap syndromes".......................http://www.medterms.com/script/main/art.asp?articlekey=8020 "Sicca Syndrome An autoimmune disease, also known as Sjogren syndrome, that classically combines dry eyes, dry mouth, and another disease of connective tissue such as rheumatoid arthritis (most common), lupus, scleroderma or polymyositis. " It does appear that you have an autoimmune issue with your symptoms. I hope it's just something common like RA. good luck
    taniaaust1 2267 Replies
    • February 24, 2008
    • 02:09 AM
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  • It took 23 years for me to be diagnosed with Sjogren's syndrome. I was previously misdiagnosed with hepatitis , then Brucellosis, then ME / CFS and finally Sjogren's syndrome.Primary Sjogren's syndrome, which occurs without another connective tissue disease, can cause profound and disabling levels of fatigue, together with aches and pains , low moods and irritability, general malaise, feverish episodes etc etc etc. It classically causes dry eyes and/ or dry mouth , but other dryness (sicca) symptoms include dry skin, vaginal dryness and gastrointestinal changes.Rarer cases can have neurological, renal , hepatic and other organ system involvement.The diagnosis is often missed when the consitutional symptoms such as fatigue dominate, and the dryness symptoms are just regarded as a minor problem and not noted by the physician or not mentioned by the patient.Interstitial cystitis is associated with Primary Sjogren's syndrome in some cases.Good luck
    Anonymous 42789 Replies Flag this Response
  • Hi Maggie, I don't know what your symptoms are caused by, and I wish you the best in finding answers! If you find it to be Fibromyalgia or Chronic Fatigue, read this. I have had FMS for 20 years (since I was 30) and IC for 5 yrs., along with other problems. IC is awful and I am sorry you have it! For those of you who don't have it, Intersticial Cystitis ranges from mild pain, to feeling like your bladder is full of sharp glass, and people have committed suicide from the pain. Some can not get out of bed due to the pain. I don't know how you could get by without strong medication in severe cases. I've had FMS for 20 years and if you can deal with IC, believe me, you will do fine with FMS! My FMS is pretty bad at times, yet, I have a very fullfilling life. Yes, I have to take Elmiron, pain medication, and many other medications, but if you find a few good understanding doctors who you will find easily by joining support groups, and bear with the medication discovery phase (what works and doesn't) you will adjust to it. A positive attiutde is needed and I really recommend support groups or good friends. Don't let anyone ever guilt you into not using medication you need - those who have not walked in your shoes, including doctors - have no right to judge what is best for you. These diseases are no fun, but you can do it with the right tools!
    Anonymous 42789 Replies Flag this Response
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