# Frustrated. Where are all the CFS people?



## wanderingstar (Dec 1, 1999)

I'm getting frustrated that FMS and CFS are lumped together in this forum as what helps FMS doesn't help CFS (I'm talking exercise mainly). They are two different illnesses. Where are all the CFS people? It seems mostly Fibro people here. ------------------susanIBS D/C type & M.E/CFS


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## Guest (Jun 3, 2001)

I think alot of people have both. And though they may or may not be related it seems if you have one you may get the other. Like if you have acid stomache problems you probably get IBS. So what is first the chicken or the egg. Since 1993 I have had wierd things happen to my body. Tiredness, weekness, headaches, stomache problems, acid, IBS, anxiety, heart beating fast, pain in joints, tingleness. I don't know if a virus (what dr.'s think) did this to me and then I got GAD (general aniety) or the anxiety caused the other problems. This past winter starting in med Dec. to april, I had such tired spells, weekness, and joint pain. ON and off to Dr. I go. even took Buspar anti-anxiety pills for awhile. Saw a Rhemtoligist(sp?) dr. a stomache dr. a therpist. Finally after dealing with the pain and fatique I tried different things on my own. Relax breathing, yoga, mild exercise, more vitiams. I am on Zantac for stomache, xanax for anxiety, tyonel for pain. Can't take anything stronger bc of stoamche problems. so I believe I have CFS, Fibro, anxitey, a wierd virus that cause all these syptoms. MY blood test came back ok, except test for mono showed up. But Dr. said more than 90o/o have had some type of mono in their lives and it will show up in blood work. That in it's self does not mean anything. Had test done on stomache where they take the tube with camera and go down throat to take pictures. I am ok except reddness and some rawness. Need to cut out acid type foods, milk products etc. So we keep serching for answers. Take care, Bonnie------------------Just breathe, you never know what tommorrow will bring.


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## wanderingstar (Dec 1, 1999)

Hi Bonnie, thanks for replying (& listening!)I think a lot more people are diagnosed with fibromyalgia in the US than the UK where I am. I have never heard of someone being diagnosed with both fibromyalgia and CFS in the UK. Oh well. I just get so frustrated that the two are lumped together when experiences and therapies for one doesn't relate to the other. It doesn't lead to great support, but then again, it is far better to have a place for both things where we can share experiences rather than have no place at all!







thanks bonnie,susan


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## weener (Aug 15, 2000)

Hi Susan, there are a few people who have CFS on this board, but you are right that there are more FM sufferers. I think there are a few similarities in the conditions, but as you mentioned they are totally different. How were you tested for CFS and are you on meds for them? Just curious what are the differences between the two? I think FM & CFS is still a mystery to the medical profession. I'm a FM'er but I'm still hear to lend an ear.


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## Nina M (Feb 10, 2001)

In Oz (Australia) CFS & FM are generally seen as two sides of the same coin, because they share many similar symptoms. Though FM or FMS, as we call it, has more diffuse muscular pain, whereas CFS presents more with fatigue. What is always made clear is that the 'fatigue' referred to is 'muscle fatigue'. It is down at the cellular level that oxygen & nutrients are not doing there job, or being blocked, or have altered pathways in some way. It is this lack of energy at the cellular level that is the cause of the various symptoms. Though it has to be acknowledged that by and large they are still in the dark as to what is really going on. That's the great pity of it because it invariably means that different doctors subscribe to different theories and treat accordingly; this shows up very clearly among the members of the support group I attend. Our support group (state wide with affiliated groups in different states) includes CFS/FM sufferers & people with multiple chemical sensitivies. They are made welcome regardless of wether they have been officially diagnosed.


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## Feisty (Aug 14, 2000)

Hi Susan!Most of us here have FMS for sure, and I'm sure the majority of us wonder if we don't have CFS, too. We all seem to be so darn tired all the time. And not just tired----totally fatigued. Brain fog, among other things. Some days I'm okay and other times I can barely manage to drag myself around---can't even think on those days. But, I don't want this "thing" to get me down, so I "plug on". Some days are extrememly hard, though.Don't worry-----we're here to help as much as we can, even though we may not have the same symptoms as anyone else.Take care.Karen


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## Debbielee (Jun 14, 2000)

susan,I go to another forum whos format is just like this one. FM and CFS are seperate forums.In fact they have a forum for everything.Let me know if your interested and i will post it.Debbie


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## wanderingstar (Dec 1, 1999)

You guys are great!Weener: I wasn't _tested_ for CFS as there are no tests (or should I say 'weren't'? There's the possibilty of a blood test - have a look at that other post I did on 'Research'). I was first diagnosed in 1990 by a consultant at the Royal Free Hospital Department of Infectiious & Tropical diseases - he was the only guy in the country with an interest in CFS at that time. He diagnosed me on the basis of my symptoms. Prior to that I had been given the erroneous diagnosis of Juvenile Arthritis, school phobia, suffering parental abuse, psychosomatic etc etc. That was my first bout of CFS. I'm now on my third. This time around my GP did blood tests to rule out auto-immune diseases, and when they came back negative she diagnosed a relapse of CFS.I posted another topic just recently 'Research into CFS' which details a possible blood test for CFS - which could be very helpful in getting people the correct diagnosis and by-passing some doctor's beliefs that we are malingerers. I'm not on any meds for the CFS as such, but I do take some things to alleviate the symptoms. For pain I take co-proxamol which I must admit is pretty ineffective. I was on 1600mb ibuprofen per day but that gave me terrible acid problems, so I stopped. I take Remeron to help me sleep at night (and for some other things). That's it really, discounting all the supplements I take which I don't think help at all. I just rest and pace myself. Nina - take a look at that other post I did recently on 'Research' - it talks about RibonucleaseL - kind of related to what you were saying about things not working at the cellular level. The introduction to their work is the easiest to read. Your support group sounds good. It is important to have a place where people can go without being judged as to what it is exactly they've got, even though I do feel frustrated when we're lumped together. Karen- well, that's one thing we have in common - one day being able to do something, another day only being able to snooze in bed!!Debbie - is that other forum you're talking about the Massachusets neurology one by any chance? They have separate FMS and CFS forums, but recommend people visit both for extra support.I guess my main reason for posting this topic was that I couldn't find anyone else 'just like me', but now I know you're all great and supportive anyway.I know it's CFS I have, and the pain I have had is consistent with CFS rather than FMS. But as that sort of pain decreases, I am more aware of muscular aches all over my body now. I'm most aware of it lying in bed first thing in the morning when everything is sort of achey and 'bruised' feeling - like I've been wrestling someone all night long! LOL. Am I right in thinking that with FMS the pain is in specific areas which are common to many people? Or is it generalised? thanks all,------------------susanIBS D/C type & M.E/CFS[This message has been edited by wanderingstar (edited 06-04-2001).]


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## wanderingstar (Dec 1, 1999)

P.S!Weener, I forgot to say that the other 'treatment' I have had is a 120mg intra-muscle pulse of Depo-Medrone (methylprednisolene) - which is a steroidal immune suppressant and an anti-inflammatory. A rheumatologist suggested this. It had quite dramatic effects on my energy levels the first time I had it, for about 6 weeks I felt a lot better energywise. The second time I had it it wasn't so helpful. I think it helped so much the first time because at that point I had a lot of systemic inflammation (would like to know why!).However this injection has its drawbacks as ultimately it can lead to supression of the hypothalamus-pituatry-adrenal hormone axis which is already suppressed in CFS. You can't repeat the injection for another 3 months and it's not recommended to have it often. ------------------susanIBS D/C type & M.E/CFS[This message has been edited by wanderingstar (edited 06-04-2001).]


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## lashes77 (Jan 16, 2001)

The "overnight wrestling" pain you talk about is one of the number one diagnostic signs for FMS. With FMS, there are tender points, but most of the time you aren't aware of them until a doctor presses on them. Instead, you do get that over all achy body feeling. Some people get it just in their backs, some get it just in their arms, but most get it all over.Sounds like you are describing FMS. Maybe you should do a little reading on that to see just how similar CFS and FMS really are. I have done this, and I have only found a few differences. In CFS, they list such things as sore throat and enlarged or painful lymph nodes. This is not discussed in any FMS stuff that I have come across. Besides that, the only true diffence i see is that most people with CFS can trace the beginning back ot a specific illness. BUT, many with FMS can do this also (such as those who have had Lyme first, etc.) If the origin of the onset is unknown, as it is with many people, it seems to be listed as FMS.See...how confusing!! My point is they seem to be very similar. Familiarize yourself with FMS, and just compare the two. It may help you know a little more. But, the "mack truck in the morning" thing you described is classic FM. Once you say that, most doctors that are knowledgeable on chronic pain illnesses will give a diagnosis of FMS. Could be possible that you too have both.I am not an expert, and have just been doing the research as I am newly diagnosed. I hope this helps you some, and maybe others that have been "educating" themselves for much longer than me can also be helpful. I know there are not as many people on this board as there are on other ones, but that does have to do with the fact that most people with CFS or FMS won't come here first for that, since it is an IBS/IBD board. I think the ones of us here also have struggled with the IBS, and that is how we stumbled upon the other section of the board. Any way that the people found their way here, they are all very helpful, and still continues to be my number 1 FMS board stop.Okay, enough said for this post!Aimee L.


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## wanderingstar (Dec 1, 1999)

Hi Aimee. Perhaps I should do some reading on Fibromyalgia as this morning 'been hit by a truck' thing is getting to me a little! And perhaps mention it to my doctor who I have to write a long letter to anyway!I think the main thing that strikes me about the difference between FMS and CFS is the exercise thing. I have seen that gentle exercise or normal exercise in small amounts helps people with FMS, but in CFS, this often causes a worsening of symptoms, unless the patient is actually recovering from the illness. This is why graded exercise can be so harmful for CFS patients. I would like to exericse, really I would! I get so sad when I hear FMS people have just been for a 4 mile walk or do exercise programs or actually are able to be in employment.







Guess I'm just jealous!!







And like you mentioned, the sore throat thing - this points to ongoing immune system downregulation which I don't know if that is also a problem in FMS.I will do some reading about FMS. Thanks for this suggestion Aimee. ------------------susanIBS D/C type & M.E/CFS[This message has been edited by wanderingstar (edited 06-05-2001).][This message has been edited by wanderingstar (edited 06-05-2001).]


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## lashes77 (Jan 16, 2001)

Hi Susan. I hope you find the answers you are looking for. As with my recent experience with exercise, I'll share what I know to be true of my situation.I have probably had FMS since I was about 18 (I am now 24). I have a really good idea of when it started, as I had a very traumatic experience that literally turned my world upside down. That is when my sleep problems began, when my migraines and tension headaches began, when I had such horrible IBS problems that I wanted to rip out my intestines, and many other things (like development of allergies, sleeping all the time I could get, etc.)As I was 18, and in my first year of college, I tried to lead a normal life full of socializing and late nights. This eventually wore me out, and I sought meidcal help. My main two problems were the IBS thing, and tiredness. Went to a GI doctor for help wih IBS, and found little relief from anything there that we tried. As for the tiredness, they diagnosed me with depression (as it has been in my family medical history) and gave me Prozac. I had an allergic reaction to that, and had to stop taking it. At this point, I was off all drugs, and just trying to cope day by day. That's when problems with family members started, and the "it's all in your head" thing made me crazy! I went on like this for several years. Meanwhile, I was a full-time student, working 5 or 6 days a week as a waitress to pay my bills. I got more tired, and more tired, and nothing seemed to help. I had seen several differnt doctors all telling me "well, test results look okay, you must just be stressed out or depressed". (Here's where I get to the exercise part!!!) So, in October of last year, I joined a women's only circuit-type exercise place. I thought if I got active again like I once was, I would feel much better. So, at this point I was in graduate school 3 nights a week, and still working 5 or 6 days a week as a waitress, PLUS trying to work out at least 3 times a week. I started out slow, and tried to work my way up. With the circuit-style program, they had it set so you do a combo of cardiovascular stuff, and weight training. You are supposed to get all you need in a 30 minute cycle. I strated at 10 minutes, and worked up.Well, beginning in February, I became really ill. My main problems were all gut related, so I kept going back to my GI doctor, and he tried several things without luck. I was rapidly losing weight, my hair was falling out, I had what seemed to be a continous cold, and I was so nauseated and would often vomit after eating or drinking anything. My GI doc finally gave up and recommended me to an Internist. I found one through his assistance, and the day before I turned 24, I was diagnosed with FMS. This doctor is very knowledgeable about it, and was very helpful. He said most other doctors probably looked over it since I was such a young age. He said I had all he classic symptoms, and my body was screaming out for help. He said the exercise on top of my waitress shifts (which is like 6 full hours non-stop busy on my feet type work) PLUS my full-time status as a graduate student taking 3 classes and teaching one undergraduate class was enough to send my body into "shut down" mode. He said I probably would have been okay (but still ill!!) if I hadn't added the exercising to my routine. But, after I am done with school in December, and I can begin to persue a career (hopefully full-time, but we'll see how that goes...), I will begin to pick up exercising again very slowly and with the help of a physical therapist to get me started. Until then, I am concentrating on school, concentrating on my health, I quit my job in April, and have gone back when they needed help, but only between my classes that ended the middle of May, and my ones that begin next week.As for me, the exercise is what overdid it. Now that i have a diagnosis and can learn about FMS ( I had never even herad of it before!) I can begin to make myslef better. I will be moving soon, and already know there is a support group where I am going. That is going to help, so that i have someone to talk about FMS with besides my boyfriend (who is slowly losing patience, and sick of hearing that I hurt, or that I just can't get out today).Not sure if this helps any, but I thought I'd share my history, especially with the exercise part, as this was what pushed my body over the limit.Aimee L.


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## wanderingstar (Dec 1, 1999)

Aimee, thanks for your reply, it was interesting to read about your experience. A little of something is often beneficial, but a lot or a 'normal' amount can really push people beyond their capabilities. I can imagine that there are many people who are so tired all the time yet exercise because they know this conventionally helps. Probably because they didn't have a dignosis, like yourself, contributed to this view. Inbetween relapses I have tended to do as much as I possibly can because I think I should be able to do what others do - work at college full time, go out in the evening, exercise 3 times a week etc etc. In reality, I can only work part-time, socialise maybe twice a week and not exercise. I was able to go swimming twice a week in my last year as an undergraduate, but that's only because I did few hours in college. As a graduate I was trying to work fulltime in college. In my periods of remision I must remember that I am not 100% recovered, just 80% and that I must be easy on myself. It sounds as if you had a lot on your plate, I hope things become more manageable. All things in moderation! take care,susan


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## moldie (Sep 25, 1999)

susan, I think many of us FMSers have both conditions. I was not diagnosed with CFS, but my first symptom was fatigue (which my doc blamed on my working and having to care for two small children at the time, but I continue to be so and my children are grown now and I don't work. While exercise does help me to a degree, if I overdue, (which doesn't take much - 5 minutes of aerobic, and I am fatigued. I could probably never do a 4 mile walk - I have to stop and rest usually after a half mile.My second symptom was feeling as if I had the aches and pains flu five times in one year following a flu vaccine. The only time I had feelings of swollen glands was when I had an infection under my crown. I feel only a slight sore throat on occasion. I don't have any night sweats, but although I can go to bed feeling very cold, in the morning I am so toasty I have to throw my covers off. I don't sweat much which is why perhaps I can get light headed and get palpatations when I am in a hot spa, or out in the sun too long. I also get light headed when I stand up too quickly. I think my blood vessels are not very flexable or don't contract and constrict the way they should, and I also have some cardiac insufficiency which showed up on my echocardiagram which might have something to do with it. Therefore I think blood pooling may be a problem. I think an altered immune response is something we also have in common.That achey and bruised feeling in the morning can be a classic symptom of FMS as lashes stated. Have you had the trigger-point test for it yet susan?


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## wanderingstar (Dec 1, 1999)

Moldie, the heat-intolerance and being unable to regulate your temperature are common in CFS. It's because your autonomic nervous system (ANS) isn't functioning as it should, and it is controlled by the hypothalamus which is affected in CFS. The feeling light headed when you stand up is called neurally mediated postural hypotension or orthostatic intolerance in the US - basically it means your blood pressure drops slightly when you stand up and it takes you body (the ANS again) a while to fix it. If this is becoming very bothersome and occurs when you stand up for a while as well, you should ask your doctor to do a 24 hour urinary sodium test on you and a tilt table test. If necessary it can be treated with salt-loading and drinking extra water. Have a look at: http://ndrf.org/orthostat.htm The blood pooling is also common in CFS although you did mention you had a cardiac problem so i'm sure that contributes. It happens because the brain doesn't tell the heart to pump the blood around so well.I've never had the trigger point test. What is that? I do have spots of unusual soreness and pain. I have had one on my neck for 2 days which has now completely gone. Is it usual for them to move about the body and only last a while? I had similar sore spots behind my shoulders and left breast on my side, but they went after a couple of weeks. Today I don't have any, just generalised achiness. The quest for answers continues! Thank you for your help, advice and sharing your experience. I wrote to my doctor yesterday about a number of things, one of them was the achiness all over in the mornings which sometimes prevents me from falling asleep again so I'll wait and see what she says. Painkillers are so ineffective and I'm already on an anti-depressant for the pain relief. Moldie - even half a mile walk is looking good!!------------------susanIBS D/C type & M.E/CFS


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## moldie (Sep 25, 1999)

It does sound like you do have some classic fibro symptoms, and yes it is usual that certain trigger points are more predominant at certain times and then it will subside, and perhaps another area will become sensitive. A physician should do the trigger-point test for you (rheumatologists and physiatrists should be knowledgeable in it). The arthritis foundation has a pamphlet out that indicates them, as well as many fibro info sites on the net. Thanks for the link. I did have a look see. Dysataunomia (sp?) is something that I thought might be my problem in the past. I have never had the tilt table test. Mitral valve prolapse is one of the causes listed, and the fact that they found mitral and tricuspid valve insufficiency (mild to moderate) on my echocardiagram might be the cause in my case. Not many people have and echocardiagram done so it would be interesting to see if they tested all fibro/cfs patints for these abnormalities, how many of them it would show up on. I only pushed the issue because I was about to have hysterectomy surgery and wanted to find out if this was a problem before they put me under since I had some symptoms as stated.Your welcome. I know that both cfs and fms are very frustrating illnesses to deal with because there are so many strange symptoms. Many doctors are so ill informed about it and many just choose to believe it must be in your head because the symptoms are so varied and bizarre.


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## Guest (Jun 9, 2001)

susan, I think stess brings on a bout of CFS. Soon we are going on vacation. I get all worked up. It is hard for me to relax. I am having weak spells again and not sleeping well. I have anxiety and panic. I need to do more of my streaching and relaxing. I keep getting these *funny* feelings like I can't breathe deep enough. So then I breathe too fast and get all weak and tingly. Right now i feel pain and tingle in my legs. I was getting laxed about vitiams but am getting back on them again. I try not to think of it too much. Take care, Bonnie------------------Just breathe, you never know what tommorrow will bring.


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## Guest (Jun 17, 2001)

Hey Susan! It's been awhile since I've been on, obviously. I have FM and CFS. I was diagnosed with the FM in 1985. The CFS symptoms became very prevalent in 1989, but it wasn't officially diagnosed until 1992. I was unable to work by 1994. The dry eyes and nasal congestion are CFS symptoms. One of the diseases they had to rule out for me was Sjogrens because those are symtoms. I use a saline spray with natural eucaplyptis and menthol in it. It's called 4-Way Saline Moisturizing Mist. If you have it there, try it. Sure makes a difference for me!! CFS is not an "on & off" syndrome. The severity of the symptoms change, sometimes daily, but they don't go away. Only 4% of people who get CFS have a total recovery. Nina had a great discription of messages being blocked. Not only on the cellular level, but with the limbic system in the brain. It is sending incorrect messages to our bodies. This is why the exercise thing is so difficult. We can walk for 15 minutes and our brain is telling our bodies we've been running for an hour!! I am a believer in the graduated exercise routine. It takes alot of perserverance, alot of crashing to figure out the boundaries, but well worth it! I started out walking 5 minutes and now I can actually hike at my favorite spot, Blue Mountain, (with my walking pals Kia and Jazz







) for an hour and that includes a hill! I go through withdrawals when I don't go. But, this even needs evaluating on a daily basis. Your learn to be very in tune to your body. (doesn't always work, but is helpful!) I have many routes, it depends on my energy level for the day. My 15 minute flat and slow or an hour with the hill and a few in between! So, it is possible, and it SO HELPS the moods. I try and go 2 - 3 times a week. If you picture 2 circles that over lap each other just a little is a good explanation of CFS vs FM. They each have their own symptoms, but there is that little bit in the middle that they share. Anyway enough of this book!! I'll try and get on here more often if you have more questions. Or, you can e-mail me.







DeeDee[This message has been edited by DD (edited 06-17-2001).]


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