What are the long-term effects of CFS?

[Hope123]

Hi, I couldn't think of where to put this so this was the best section I could find.

I'm interested in what the long-term effects of CFS are. There are very, very few studies on the consequences of CFS - there are two studies that followed up people 10 years later but they tended to focus on "recovery" (placed in quotes because the definitions of recovery have been vague) and not so much what medical issues people have had to face. Further, as many of you know, CFS being viewed as a psychological disease has greatly hindered research. It's infuriating that people suffer for year-decades yet there is very little done on long-term consequences. This is unlike almost any other chronic illness. Don't we deserve to know more about our prognosis?

I know lymphoma has been mentioned and possibly heart failure. I'd be interested to hear about this. Are there any diagnoses you received after your CFS that you did not have before CFS? And how were you diagnosed with this other condition? Self-diagnosed? Diagnosed by a health care person? About how long had you been sick before you were diagnosed with other condition? (Anything counts - high blood pressure, diabetes, etc. Point being are people with CFS developing a condition more than expected compared to general population.)

(I know that prior medical conditions you had with your CFS might have been exacerbated but to be clean, I am asking only about conditions developing after CFS.)

If I get some intersting responses, I might be able to hook a researcher into looking at this subject. Thanks!

 

[Anika]

Hi, I couldn't think of where to put this so this was the best section I could find.

I'm interested in what the long-term effects of CFS are. There are very, very few studies on the consequences of CFS - there are two studies that followed up people 10 years later but they tended to focus on "recovery" (placed in quotes because the definitions of recovery have been vague) and not so much what medical issues people have had to face.


(I know that prior medical conditions you had with your CFS might have been exacerbated but to be clean, I am asking only about conditions developing after CFS.)

If I get some interesting responses, I might be able to hook a researcher into looking at this subject. Thanks!

Hope, I just came across this thread and thought I'd give it a shot, though I (fortunately) don't have much dramatic in terms of diagnoses.

1. I had a cervical polyp removed (benign). No necessary relationship to CFS. I think I read a year or two later that Nancy Klimas had seen some nasty cervical cancers in some CFS patients, but I haven't read anything about that since, so I may have the wrong cancer or the wrong doctor. (Though, it would be interesting if that observation true, given that XMRV apparently likes the reproductive organs.)

2. While it may not qualify as totally "new", as I'd had perhaps one or two yeast infections lifetime before CFS, I feel I should earn frequent flyer miles for several infections a year that started a few years after CFS diagnosis.

OK, back to you or the next person!

Anika

 

[gracenote]

I've had ME/CFS for 28 years. I also recently tested positive for XMRV.

I had malignant melanoma about 18 years ago, but don't actually think it was connected to CFS. I'm a fair-skinned red-head (actually auburn) of Scandinavian descent, who sunburned easily as a child. The melanoma was caught before it spread.

My gallbladder problems stem directly from getting infected with Hep C, again unrelated to CFS.

I've been diagnosed by Cheney with diastolic dysfunction, but do not have any heart issues that would be diagnosed conventionally.

In fact, all my symptoms from digestion to sinus to allergy to fatigue do not show up with conventional tests.

I have strong bones, no diabetes, no weight issues, etc.

Basically, other than being very ill, and becoming more home-bound as the years go by, I'm quite healthy. Good to know.

 

[caledonia]

I have heard thyroid cancer mentioned as being way higher in the CFS population than the general population. My mom had CFS for 35 years, had thyroid cancer and then various other cancers, and died from cancer.

 

[Anika]

I've had ME/CFS for 28 years. I also recently tested positive for XMRV.

I had malignant melanoma about 18 years ago, but don't actually think it was connected to CFS. I'm a fair-skinned red-head (actually auburn) of Scandinavian descent, who sunburned easily as a child. The melanoma was caught before it spread.

My gallbladder problems stem directly from getting infected with Hep C, again unrelated to CFS.

I've been diagnosed by Cheney with diastolic dysfunction, but do not have any heart issues that would be diagnosed conventionally.

In fact, all my symptoms from digestion to sinus to allergy to fatigue do not show up with conventional tests.

I have strong bones, no diabetes, no weight issues, etc.

Basically, other than being very ill, and becoming more home-bound as the years go by, I'm quite healthy. Good to know.

I have heard thyroid cancer mentioned as being way higher in the CFS population than the general population. My mom had CFS for 35 years, had thyroid cancer and then various other cancers, and died from cancer.

Sorry to hear about the cancers you and your families have experienced. I'm glad you've had no recurrence, gracenote.

I think once or twice I've had to answer a question about how healthy (I think) I am. Well, just like you gracenote, apart from CFS, which keeps me mostly at home and sometimes in bed, I'm a great specimen of health by conventional tests (apart from gaining weight with the DD- so that would be my self-observation not a diagnosis). So, who knows how I answered that question, it could go either way. I hate that question!

Re allergies - gracenote, are you saying you have allergies (like food, especially) that can't be diagnosed conventionally? I think there are some food allergy tests out there now that may be more respected than when I to sick, but I haven't had them or inquired closely.

I do have sometimes severe airborne allergies like pollens. Allergies got notably worse or new or retriggered when I first got CFS symptoms, but I got "conventional" testing and treatment for those allergies before I got a CFS diagnosis. By the rules of the post I can't say it was definitely a new, post-CFS, diagnosis, but it definitely happened at the same time I came on with CFS.

Anika

 

[Carrigon]

Early heart attacks between ages forty to fifty. Higher incidences of cancer. Those are the two majors I've known about with long term CFIDS/ME. Also, some patients find their digestion completely gives out, they can't digest any food at all and often die of that. But each case seems to be different with all of it. There is a CFIDS Memorial list up on the net, you can look through it.

 

[coxy]

i'm wondering if sudden deteriation in eye sight is connected. My daughter had an eye test just before diagnosis all was perfect, 5/6years down the line one of her eyes is very bad indeed, obviously she now needs glasses only for one eye though. My eyes have also just failed an eye test for the first time (although i'm at the age they would start to deteriate i suppose, no problems 2 years ago before diagnosis though). My daughter says most of her teenage friends with me/cfs now need glasses or have glasses.

 

[Jenny]

I'm long term - first ill 28 years ago, but did have long remissions in the 1990s.

I had a brain haemorrhage 5 years ago - I think partly caused by inflammation of blood vessels in the brain.

No other problems so far, but in the last few years I've been worse than I ever was with more pain and neurological symptoms - so for me the illness has been progressive and my 'recovery' wasn't permanent.

Jenny

 

[mjay]

Can of worms: IMAGINITIS

Thanks for the post Hope.

I think it is a very good question and am interested in others experiences.

Since onset of CFS (about 9 years ago) I've developed lots of symptoms which may (or not) be related to CFS, meds I take and lifestyle constraints.

I'm a 50 year old male with normal BMI. I have recently been Dx with osteoporosis, which is unusual for my demographic. It is possibly due to taking wake-up meds over the last decade (original Dx of ADHD) but I suspect it is more related to the CFS and some mechanism related to calcium depletion (I remember reading something about that somewhere...)

I've also developed LUTS (lower urinary tract symptoms: urinary retention, bladder dysfunction, frequency, hesitancy, nocturia etc.) over the last few years, again possibly due to meds/endocrine problems but not inconsistent with just having CFS (according to the Canadian criteria... anyone else esp. blokes experience that?)

Rx for LUTS is driving me NUTS... very very tired, as if I need more of that!

Other things I've noticed since CFS was Dx: BP is increasingly labile, esp. in response to stress.
Tachycardia is par for the course. BSL's are trending higher. Testosterone is trending lower.
Eyesight is trending lower (at half a diopter a year, opthalmologist says a quarter diopter a year is normal but hasn't heard of any connection between CFS and eyesight).

I'm still not totally convinced I have CFS, in some ways I'm hoping I've got something more treatable like MS, an endocrine disorder, cancer or heart disease... Not really but...

Doesn't help if you have a GP (LMO, primary care person or whatever) who is keen to prescribe antidepressants at the slightest hint of IMAGINITIS (aka somatisation disorder).

Would be good to hear from anyone with similar experiences.

Cheers
mjay

 

[IntuneJune]

Diagnoses: Hypothyroidism, immune deficiency, celiac disease, osteopenia, Sjogren's syndrome, severe bunions, plantar fasciitis with heel spurs, restricted airway disease, early onset arthritis of the spine, arthritis of many joints, lymphedema, 1200 calorie intake--any more I gain weight, memory impairment (which makes answering this simple question difficult). I was diagnosed 30 years ago.

 

[Knackered]

I've also developed LUTS (lower urinary tract symptoms: urinary retention, bladder dysfunction, frequency, hesitancy, nocturia etc.) over the last few years, again possibly due to meds/endocrine problems but not inconsistent with just having CFS (according to the Canadian criteria... anyone else esp. blokes experience that?)

Rx for LUTS is driving me NUTS... very very tired, as if I need more of that

I have it, I've had CFS 6 years and I've had bladder problems for 4 years on and off, mostly on nowadays, I wake up 3-4 times per night needing to urinate, it isn't an age issue either as I'm only 26. All urology tests came back normal.

 

[Sing]

At 60 after at least 15 years of CFS, I have increasing OI, cognitive troubles, weakness, incoordination, osteoarthritis, hypothyroidism and low endocrine function generally, intolerance to cold, sun sensitivity, chemical sensitivity, myofascial contractions and aching, and digestive troubles. I haven't had cancer and don't know if I have any heart condition.

 

[Mithriel]

The bladder symptoms you mention were part of my original illness when I was fourteen.

I have been ill for almost forty two years. My original neurological symptoms have become much worse and I am now very disabled with intention tremors, paroxysmal dyskinesia and dystonia. A lot of my pain now comes from spasms and neuropathy rather than the lactic acid burning I got when I was more active.

My memory has become so bad all the time that it is frightening though long ago I would get lost, forget how to get home, those dementia things when I was more active.

I have had high blood pressure since my forties, bad genes, but I think the ME has made my BP less robust. I get sudden plummets.

I have always had episodes of hypoglycaemia and am now diabetic. I think this has a lot to do with my ME. A throwaway statement in an article I read said that the glucose/ insulin system is under the control of the autonomic nervous system. Now, I have great trouble regulating my temperature. The usual feedback system doesn't cut in soon enough so I get wild swings and I think that this, combined with age and my genetic disposition has caused my diabetes.

The past 10 years I have also developed extremely dry eyes. This is down as Sjorgen's Syndrome but I suspect it is just another consequence of ME. Almost every night my eyelids stick to my eyes and tears them and my tongue sticks to my teeth and tears. It is all very painful and is wearing me out.

My children are grown and I am housebound, spend most of my time lying in bed or my recliner so some of the things that I used to get when I did more have lessened.

With ME and its consequences not being recognised we don't have our health monitored enough and we are seen as having mild cases of other diseases whereas we actually have severe case of ME.

Other than the ME I've been rather healthy. I eat well, take vitamins, no vices (no choice!) and would have a healthy lifestyle if I wasn't so inactive. Unfortunately the inactivity has piled on the weight.

I crave exercise the way others crave chocolate cake. If I have XMRV and there is a treatment I'm off to the gym :Retro smile:

Mithriel

 

[Sing]

Mithriel,

Your post was so interesting to me and I think you said some really important things. This being one: "With ME and its consequences not being recognised we don't have our health monitored enough and we are seen as having mild cases of other diseases whereas we actually have severe case of ME."

I also want to ask what the following mean: " intention tremors, paroxysmal dyskinesia and dystonia" ?

I feel this way too: "I crave exercise the way others crave chocolate cake. If I have XMRV and there is a treatment I'm off to the gym."

Thank you for your great description and a very thoughtful post!

Sing

 

[mermaid]

I was diagnosed about 18 months ago, with ME/CFS but reckon it started slowly around 5 years ago. I was diagnosed with a macular hole (you lose fine vision and get disortion in any vision), last year at the age of 56 which I believe is on the early side for this - average age, and it's not that common, is at least 10 years older I would guess. Thankfully I have had op to restore sight and other eye ok so far. I was told there was no known connection with ME/CFS but I wonder.

 

[Mithriel]

Mermaid, I am glad your op was a success. I have had periods of blindness and I hated it. It is a dreadful disability and I admire people who cope.

Sing, I have come across a few people with ME who have a movement disorder. Dystonia is when the muscles twist abnormally. It can be very severe, but I just have a mild form though it makes my muscles ache. My palms want to face out and I get the "chicken wing" look. My arms twist into unnatural positions and I can't get them to move back very easily.

Paroxysmal Dyskinesia basically means disordered movements. The old term was choreoathetosis.

There is kinesigenic PD where you have intention tremor. If I try to do anything my hands wave wildly. I was so bad at one point I had to get my food cut up and fed to me at but baclofen has made them more manageable. I still have trouble getting my foot onto a step and no one will let me near a kettle or teapot but I do much better now unless I am tired.

Non - kinesigenic PD is when your arms wave about.I am just sitting minding my own business when off they go. It disconcerts visitors when everyone ignores me waving about in the corner but the family are used to it. Small children wave back to me which is kind of sweet.

The paroxysmal refers to sudden random swings which take everyone by surprise. I have given my husband a black eye. Noise always sets it off. If someone has a cough it is embarrassing for both of us.:Retro smile:

Strangely, I got to know a neighbour with MS who had exactly the same problem. PD is classed as a side effect of MS but she is the only person I have met who had it. (It is different from the spasms of MS) We would sit in the hyberbaric oxygen chamber and shake in unison :Retro smile:

She was told by her neurologist that PD is usually presents as a genetic disease starting in childhood but can be a consequence of neurological disease. Some experts believe that people get it because they have a mild genetic form which only expresses itself after neurological insult.

I was given gabapentin for pain and it has also cut down on some of the sudden movements.

I had ME for over twenty years before this started. I first heard of it when another ME sufferer mentioned that herself and a few other people she knew with ME had it.

Mithriel

 

[heapsreal]

I have improved on antivirals to a level of 9 out of 10, but i still have major sleep problems which can leave me hung over for the day and running below par. 8 years of cfs i think has broken my ability to sleep properly, plus restless legs also, If i get good sleep im a 9/10 but if i dont im crap. long term health consiquences are a worry, possibly due to being sedentry. Thats why i think taking supplements for general health may not directly help our cfs but can help with other potential problems down the track.

 

[Sing]

Mithriel, I am impressed with your vocabulary! What I mean is that you really know what is going on with the movement disorders you have. Thank you for spelling this out. I have much less problem. My arm does swing out sometimes; I drop things inadvertently sometimes; and my aim can be a bit off with hands, feet or mouth too when I am trying to eat. This is still in the realm of awkwardness and clumsiness rather than something people would be disturbed by. But I know it is my nervous system, losing some of its organization and fine tuning.

I've been taking gabapentin for several years for all the aching I have from overly contracted muscles and fascia. I started because I was waking up throughout the night due to pain and now I can sleep through, just getting up once to use the bathroom. (I take trazodone too, but it wasn't holding me in sleep when my body ached so.) Can't say that the gabapentin helps me be more coordinated during the day, but I am more comfortable in this body.

Here is hoping we get some effective treatment before long!

Sing

 

[kaazoom]

I have had ME/CFS for four and a half years. I developed a movement disorder that I believe is a paroxysmal dyskinesia about five months after my illness started. The problem for people with ME/CFS, especially in the UK, is neurologists are quick to decide it is psychogenic even when there is no psychiatric problems. I have only heard of a few people with ME/CFS who have paroxysmal dyskinesia, and only one who has had it confirmed by a neurologist. I have never seen it listed as a symptom of this disease which often made me question whether I have been wrongly diagnosed.

I have made a video a an attack http://www.youtube.com/watch?v=VQBUSCnPz-0 . This is me at my worse. This attack lasted for a couple of hours. I get these and other movements throughout the day, although not as often or as bad as when I have an attack. Attacks like this one usually happen after I have done too much. The other movements I get can be quite complex involving my mead, upper body, arms hands and fingers, some are fast some are much slower, but all of them involuntary. There is no build up like most people if they have tics.

I have to warn people I don't know about them as they can make people jump. Not a good thing if the person is driving! Fortunately my wife is used to them now.

Paul

 

[heapsreal]

Hi kaazoom, i remember seeing another youtube of yours where u found the cause of your cfs, u were a young boy and your fish died. Its good to see u have a sense of humor and took the p-ss out of psychologists who dont believe in cfs. I think diferent neurological symptoms happen to cfsers, sleep and memory are my worst at the moment.

good luck mate