# I need some hope. I'm scared. I'm angry.



## Jenrollie (Sep 29, 2003)

Hi,I found this group by looking into IBS. As I did further research, I found alot of the symptoms I have are found in the CFS groups. I have been suffering for years, and have declined to the point of losing 2 jobs, one after 7 years of being a "star" employee. I have not been officially diagnosed with CFS, but with many other things, none of which explained the vast number of "mysterious" symptoms I was having. Most dr's I saw over the years concluded that I was depressed, needed more excersize, etc. (I used to be very active until I no longer could be.) One even asked me what I was feeling guilty about. "Guilt can make a person feel awful." The last doctor I saw asked me what I expected him to do about it when I explained to him that I was no longer even able to work due to pain and fatigue. I just walked out in tears and haven't been to a doctor since.I have had a hysterectomy, taken countless pills for pain, for depression for anxiety, but none of it really seems to help much. I have tried to walk as often as I can, something I used to love, but I get so fatigued. I used to be considered very intellegent, these days I have times that I can hardly form a sentance, let alone follow a train of thought or a conversation. I was raised in a family of very intelligent, hard workers. "Lazyness" and "stupidity" are unforgiveable. I have fallen away from my family for that reason as they can't understand.I no longer have any insurance coverage.I don't even want to see another doctor, is there a good reason to have a definate diagnosis?Please respond with any feedback.


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## Susan Purry (Nov 6, 2001)

{{{jen}}} welcome to this forum







It sounds like you have had some very unhelpful doctors - unfortunately, quite a common experience for those who have CFS. I can totally understand your reluctance to see another doctor, I felt just the same way after months of tests, pejorative remarks and misdiagnoses. But things have moved on over the years. Seeing a doctor that actually knows what CFS is would be useful! A rheumatologist might be a good idea. You ask if there a good reason to have a definate diagnosis. Well, I think there are a few reasons:
you'll know what the matter is.
you'll know what you're dealing with, so you'll know how to best manage it.
you'll be able to put a name to what you are experiencing, which makes it easier to live with (believe it or not!), and easier to explain to others. You'll be able to tell your family (if you end up with a diagnosis of CFS) that your not doing some things is because you have CFS, a physical illness, rather than because of a lack of motivation, laziness or stupidity.
you may be able to claim disability benefits if that is necessary.
Take care of yourself


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## M&M (Jan 20, 2002)

Susan had great advice - I agree with all of it!(((Jen))) Welcome to the forum, I hope we can at least make you feel not as alone in your pain! And, maybe you can find some helpful information here.


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## Feisty (Aug 14, 2000)

Welcome, Jen.







Susan had some excellent answers for you. I hope you can find another Doctor who is familiar with CFS. As Susan said, a definite diagnosis is important to you, as well as family, etc. Also, it sounds like you would be a good condidate for receiving disability benefits. Make sure you document everything. It will be useful for claiming diability if you decide to go that route.Take care.


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## Jenrollie (Sep 29, 2003)

Thank you all who responded. I will continue to try to get insurance. I now work for my daughter who was in an accident 7 months ago that left her disabled. The nursing agency that I am hired through offers no benefits but I contacted the county who helped me find some agencies that might provide me with ins. benefits. Once I have insurance, I will see a doctor. I am very glad to have found some support, thanks to you all.It would be good to be able to put a name to what has changed my life so. I have been diagnosed with a number of conditions that I now see are probably symptoms of CFS. Formally, I was a very active, healthy person. Over the past few years I developed IBS, a-fib, (a heart condition for which I am also on meds for), sleep apnea, depression and anxiety. All of which led to a variety of life changes that I have found hard to "embrace". Add to that almost constant fatigue and pain which is at times imobilizing and a decline of my mental abilities I feel like I am sliding down a hill of sand and I can't get a "foothold" to stop myself, let alone try to get back up. Since my daughters accident, I have been her full time caregiver and there have been some blessings in that as we have developed a very close and very supportive relationship, but it is all I can do to take care of her some days and there are times that I am unable to give her the level of care that needs. I just started taking some new liquid vitimines that contain all kinds of enzimes etc. I am hoping that will help. Thanks again, Jen


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## livinwithmcs (Oct 11, 2003)

I'm new to this board but thought I would pass along this info to you.You may want to do some research on Multiple Chemical Sensitivity. Many cases of CFS are actually caused by MCS.Are you sensitive to chemicals (perfumes, laundry detergent, fabric softner, household cleaning products, etc)? Do you get dizzy if you go down the laundry and cleaning isle at the supermarket?Your story sounds so much like mine, a slow deterioration. And how about that brain fog?I also saw many, many doctors before being properly diagnosed by an Environmental Medicine Physician. You can find one in your area by looking for a doctor who belongs to the American Academy of Environmental Medicine. Hope this helps you.


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## celticlady (Aug 6, 2001)

((((jen)))))You are not stupid or lazy,you are ILL!!!!!!I live in MN also,I highly recommend MN Pain Center(Dr Samuel Yue and Nurse Practitioiner Nancy Schmidt)They are in Lake Elmo,MN 651-731-0707.My diagnosis is Fibromylagia.They have helped me a lot!!! Today I am not up to typing all the specifics,but might be worthwhile to book an appt with them in a few months(they may be quite booked out,as they are excellent!They have goven me hope when all hope was almost gone)If you can,get insurance!! Look into "minnesota-care" if possible??***You DO need a specific diagnosis to be treated correctly.and also if you become completely unable to work!!!! I used to have a job making great money,cant work for past few years and have had to be on Soc SEc Disability. It takes months,sometimesYEARS to get on SSDI so recommend you see MD and get a diagnosis sooner rather than later.Send me a PM if you want further info.Good luck!From one Minnesotan to another







Celtic(Pardon all the typos,my hands are stiff and wont type well this AM)


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## celticlady (Aug 6, 2001)

Oh,1 more thing....I also take relaxin(Vitalaxin) a supplement recommended by my clinic as mentioned above.(do not take this without MD guidance!!!)I also was instructed to follow a strict gluten-free(wheat,etc) and casein-free (dairy-free) diet.It is a strict diet,but i feel much better when I follow it.You have to eat rice-based products on this diet(such as rice bread,rice cakes) NOT regular bread,which is kinda the pits.....but I feel much better!!!!Celtic


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