ME / CFS - My experience [rant]

condra

Thanks Cathy.

I'll never give up.

Part of what spurs me on is the prospect of being able to say "I told you so" to the many people who have doubted me in the last 6 years, especially that as**ole shrink in The Mater who prescribed me anti-depressants like he was selling sweets to a kid.

Sorry for my current bitter tone. It's hard to be gracious when I feel so ill and think of the many times people (both medical "experts" and aquaintances) have written me off as a hypercondriac.

The_Conductor

I know what you mean- it took me almost 11 years to be diagnosed with Crohn's Disease (and it was only done as a last resort when I had been admitted to hospital, 6 stone in weight and unable to even drink water).

Misdiagnosis is really really bad- I am not sure that it is necessarily an Irish problem though (having read numerous horror stories particularly from the States- thank god we're not over there).

Keep knocking on doors- eventually you will find a sympathetic doctor who is willing to go the extra mile and test for some of the more abnormal things.

Training in Ireland has changed recently- my sister graduated from Med in Galway 2 years ago- they were all encouraged to do at least a 6 month stint in tropical medicine in a third world country- which my sis is augmenting with A&E duties in South Africa and Australia. We are not the small little island that we once were- the more unusual conditions are a lot more prevalent here than they once were- it makes sense to have a corp of doctors who are in a position to correctly diagnose those conditions presenting to them.

S.

condra

Thanks for the encouraging reply smccarrick.

11 years of suffering, before a crohn's dx sounds outrageous. I'm really saddened to hear about your ordeal, but it angers me too.

Fortunatly, I found a good GP in my local practice. She is the only GP, of about 4 that I have attended, who has shown a genuine concern and empathy.

Unfortunatly she is currently on maternity leave and her replacement thinks I'm a hypercondriac!

Regardless, I am going to try to get the ACTH stimulation test for Addisons, and at some point might get properly tested for Lyme disease.

LegacyUser

Hi All,

OP, sorry to hear about your suffering - my mother has had ME/CFS for 21 years and it truly is a horrible illness.

A quick aside though: I just came across this thread and read Tallaght01's posting and blog link. Having observed first-hand the suffering of my mother for over two decades, reading that blog has really made my blood boil. It's typical of the condescending bullsh1t that pervades the medical 'profession'.

While there may be no definitive test for ME/CFS/whatever any 'expert' wants to label it, there is a real disease there and saying you, as an 'expert', don't believe in it just adds to the pain of the sufferers and their carers. Not only do ME/CFS sufferers have to deal with their debilitating disease, they have the double blow of dealing with the dismissive attitudes of those responsible for their care, more so than many other illnesses.

My mother was bitten by an insect while in Majorca last year. Long story short, she was diagnosed with Lyme disease after many months of scans (the consultant laughed at her when she asked him if it was a possibility -- suggested by our excellent GP -- but eventually did the test). Initial treatment helped the symptoms for the first month, but has since relapsed and she's in awful pain.

She's hoping to visit a Lyme specialist in Cardiff when she recovers a bit and is not bed bound. I guess we're hoping that maybe the treatment of the Lyme will help with the ME/CFS symptoms too. That Lyme test was the only test that ever came back positive for her..

Hope you are doing better..

condra

Interesting reply. Thanks for posting.

Fascinating that your mother got Lyme, after suffering CFS for many years, considering that research seems to indicate a possible link between Lyme and CFS.

Had she been tested for Lyme before that Majorca? Im just wondering if theres a possibility that she already had Lyme. From what I've read, a significant amount of CFS/ME patients have recently tested positive for Lyme.

Perhaps there are more people with Lyme than it is thought, or stranger yet, perhaps people with ME/CFS are in some way more suseptable to contracting LD.

As I think I may have mentioned somewhere in the thread, a friend of mine Lois Davies suffered from CFS for a number of years, was treated like sh** by most doctors, and eventually tested positive for Lyme. Appearantly the treatment she recieved was a number of months on antibiotics and responded very well to it.

I know how it feels to have a parent with long term health problems. I wish you and your mother the best of luck.

My mother is getting a check up tomorrow and is going to enquire about an ACTH (Addison's) test for me, so fingers crossed.

rossiepp

Hi all.

I'm new to this forum craic so bear with me..

A few years back i was very ill with Viral Meningitis. It took about 3/4 months to fully recover. However, June of last year I became ill again and basically I've been ill on/off since then. I wouldn't know where to start with explaining my symptoms. It all started with stomach problems, migraine and mainly "flu like" symptoms. Ive been in/out of hospital, I've had numerous XRays, Scans, Food Intolerance Test, Endoscopy, Colonoscopy, MRI Scan etc.

The diagnosis for the stomach was Acid Reflux and Chronic ISB, although that took months for them to figure out.. the headaches were diagnosed as Migraine and Vertigo (dizzy spells). The list goes on.. I've been on medication for same for over a year, along with medication for low feretin(iron) and various other things. At one stage it was suggested that i take antidepressants although i refused profusely... I knew i wasn't depressed, more like "stressed out" because i was sick all the time and getting no answers as to what the hell was wrong with me!

Last July i started to get what i can only explain as "stinging or burning pains" up my spine, neck, left arm and left leg. At times its so bad I cannot walk up the stairs. Its very frightening, you feel like you are going to die with the pain of it. My GP sent me to MAU in the hospital. Its the Medical Assessment Unit and finally i was referred to an excellent consultant. To cut a long story short, he did every test under the sun, bit like an overall NCT! He was brilliant, easy to talk to, listened to everything I had to say and finally excepted that something was up. I have now been recently diagnosed as having Lyme Disease. While it is frightening to find out about it, its a relief that I know I'm not going mad! At times i feel no-one believed me that i was so unwell on the inside but kept the brave face and tired my best to just "get on with it" as they say.

Lyme Disease has different stages and as I'm having severe neurological symptoms, it seems i may be in the second or third stage Lyme Disease. Basically the bacteria has been in by blood for years! Lyme Disease carries many forms and the only way of finding out what Lyme bacteria is in your blood stream is to have it tested in the UK. I'm currently awaiting results from my blood tests sent to England. In the meantime I'm on very strong antibiotics the past 3 weeks, and new painkiller specifically for neurological pain. The symptoms have eased off, a little but Ive developed a kidney infection, on top of everything else and I'm off work sick once again, in the bed most of the day, its driving me silly! Thank god for the laptop here on my lap..

Womoma, I would strongly recommend you go to your doctor and tell her, actually INSIST, you want your bloods sent to Western Blot in the UK. A blood test done in Ireland can only confirm that there is Lyme present in your blood but needs to be sent to Western Blot for confirmation of the type/types of Lyme bacteria, in your blood system.

Meanwhile, its been a relief to find this forum, I've been searching the net since I found out that I have Lyme Disease and there is so much information but mainly from American Sites. Lyme Disease is so rare in Ireland, relatively new, so they say. There is so little known about Lyme Disease in Ireland, its crazy. My own GP knows very little about it as its so rare but hopefully when my blood tests come back from the UK (it takes 6/8 weeks) I can start proper treatment, although reading through many of the American Websites its a bit frightening to find out that its not curable.. Will just have to hold out until i hear form my Consultant. He might have a word in my ear as he told me NOT to be going looking it up on the net, said it would only alarm me..!

If anyone has been diagnosed with Lyme Disease or have anything like my symptoms above etc I would be grateful to hear your stories or get in touch.

Hopefully things will get better..

BanzaiBk

rossiepp wrote: »

Hi all.

I'm new to this forum craic so bear with me..

A few years back i was very ill with Viral Meningitis.

Hey welcome to the forum:) I find it interesting that your problems started with viral meningitis, so did mine. I can understand completly how horrendous the "recovery" or lack there of was. I hope you get some good info on your topic.

rossiepp

Hi BanzaiBk,

Thanks for your message. Hope you've fully recovered from viral meningitis yourself. In the meantime, yea i hope i get some more info on Lyme Disease. In the meantime, ill keep a check on this forum, some-one's bound to have similar experience.

Keep well you..

condra

Rossiepp, great post, very interesting to see so many similarities with my own story.

As I mentioned, apart from Addisons, Lyme disease is next on my list for proper testing. Lyme was indicated in one blood test I had done, and I was called back for a second test, which appearantly appeared negative. But I'm not sure if the bloods were tested in UK or not.

condra

PS- I too was offered anti-depressants and refused profusely.
It is astonishing how thoughtlessly anti-depressants will be perscribed to people. I have no doubt that anti-depressants could prove harmfull to people with certain conditions and Im so glad I didnt agree to take them.

rossiepp

Hi Womoma,

Firstly, apologies I've only just read the whole thread and realised you have been suffering for so many years its scary!! I posted my reply here on your thread to another thread under Long Term Illness specifically for Lyme Disease, have a look, here is some interesting information regarding Western Blot blood testing from r3nu4l

Your explanation of how you go stone cold and feel severe nausea and the severe shivering or shaking is something I'm going through at the moment and likewise i hit the bed with the hot-water bottle... Yes i totally agree it is a very scary experience. As i mentioned I'm on antibiotics and pain relief for the neurological symptoms at the moment, so hopefully it will pass.. till the next time!!

Id ask your doctor if your second blood test for Lyme Disease was sent for Western Blot in UK for proper diagnosis, if not, get it done again..

Its great to have found this forum, I'm finding it fascinating reading all the posts from different people suffering so much and so many similar experiences.

condra

I was at the Doc today. New guy. Not impressed to be honest. He seemed fairly adamant that I didnt need any more testing, that I had had lots done already.

He scheduled some blood tests for me, to look at my liver and sodium, seemingly just to appease me.

He didnt mention where the second Lyme test was done, but was adamant that it was conclusive. Interestingly, while looking through my records, he told me that I had tested POSITIVE for EBV (Epstein Barr Virus) though, as I recall, I was initially told that it came up negative.

He said there was no point testing for Addison's because "we usually see it in middle aged women, and they show signs of pigmentation around the mouth"......

CathyMoran

womoma wrote: »

I was at the Doc today. New guy. Not impressed to be honest. He seemed fairly adamant that I didnt need any more testing, that I had had lots done already.

He scheduled some blood tests for me, to look at my liver and sodium, seemingly just to appease me.

He didnt mention where the second Lyme test was done, but was adamant that it was conclusive. Interestingly, while looking through my records, he told me that I had tested POSITIVE for EBV (Epstein Barr Virus) though, as I recall, I was initially told that it came up negative.

He said there was no point testing for Addison's because "we usually see it in middle aged women, and they show signs of pigmentation around the mouth"......

You should demand to get tested for Addison's - when I was waiting to be diagnosed with oesophageal cancer there were several doctors who refused to test me because I did not fit the profile (even though I had it). It gets me so fustrated when I hear about doctors refusing to listen to their patients. Find a GP who will listen.

condra

Thanks again for the reply Cathy. I was also advised elsewhere (by an Addisons sufferer) that the docs opinion was "utter rubbish".. that "Addison's doesn't fit a general profile for age and gender".

Im so pi**ed off today, having had a day to reflect on what was a very disappointing visit to an utterly complacent, sceptical, and frankly, charmless GP.

I dont think I have Addison's, but I want to be tested for the various conditions which are reccommended as priority tests for patients complaining of CFS type symptoms.

I really dont know what to do next. I think I might just wait until the bloods are back for the liver/sodium and regardless of what they are, demand to see an andocrinologist when that a***ole doctor rings me back, if he even bothers to.

condra

PS - I've also been advised else where on two things.

1 - that I might be able to get a Cortisol test in a walk-in clinic.

2 - to see Patrick Mc Govern, over in Goatstown.

Ill have to look into both of those options too.

_Whimsical_

Hi Womoma. I'm no expert but I have regular blood tests and I find that the straight cortisol blood test always comes back from the lab saying that it's inaccurate and that the Synacthen test is the only totally reliable marker of adrendal dysfunction. I have that done sometimes too. That's where they give you an injection of sythetic ACTH and then test your blood for cortisol afterwards. I don't think they do it in walk in clinics. You might be better off to just go to the consultant although I hear he is very expensive .Hopefully it'll be worth it. Good luck with it.

Suaimhneach

Just read the whole thread. Just have to say that you're so brave and amazingly strong considering what you're going up against. To see that you dont take the anti depressants and keep on fighting is great. I hope you get a definite diagnoses soon. Between now and then I hope you can stay positive.

galah

Hey everyone!

Glad (in a twisted way) to hear that I'm not the only one struggling with the "health" system in Ireland!

I was diagnosed with Fibromyalgia (some symptoms are the same as CFS), but it took about 7 years, and one very good doctor to find out what's wrong.

I hope all of you will finally get the treatment you deserve, that someone out there recognises what's wrong, and stops dismissing symptoms as "hypochondriac" and "depressed" - it is such a struggle to explain to doctors that one is NOT depressed, and not "feeliong down", and the whole experience, up to last year, has left me with such a bad impresssion on healthcare in Ireland, that it will take a long time to change that. Anyways, rant over...

One thing about anti-depressants though: I know it sounds a bit strange, and maybe it's utterly subjective and confined to a few people, but I found that taking anti-depressants did help me improve my sleep, and therefore improve my overall condition! I used to need a lot of sleep, but always woke up knackered, even after 10 hours or more of sleep - because my brain never really switched off, and I never actually reached prolonged phases of deep sleep that are vital for regeneration. Taking a low dose of prothiaden has really remedied that situation (my GP prescried them, since he also suffers from CFS, and is therefore in a good position to judge) - the dose is too low to treat depression (since I am not suffering from that), but it does improve my sleep, and therefore my energy levels, which then in turn keeps the Fibro symptoms in check - I am nowhere near as knackered as I used to be!

It might be worth checking it out, even if it's just a trial.

Hope it all works out for you - good luck!

Alun

I'm about to head down this route myself, and this thread doesn't make good reading I have to say. I too am suffering from a whole range of apparently disconnected symptoms, none of which when considered in isolation is that serious, but which in combination are making me feel like **** most of the time. My GP isn't that much help, but last week I went to see her again and there was a locum there who seemed to take my complaints more seriously and has referred me to a neurologist. Or at least, she tried! I rang up and was told that he wasn't taking on any more private patients, and was offered no alternative but to go back to my GP and get her to refer me to someone else. This kind of nonsense doesn't bode well for a start.

I too am not depressed as such, although the apparent disinterest shown in my symptoms by the doctors thus far is certainly getting to me, and making me somewhat anxious and irritable, which could I suppose be interpreted by them as depression.

You'd imagine that with diseases like the ones discussed in this and the Lyme's disease thread apparently becoming more widespread, that the medical profession would adapt it's traditional "let's try this - let's try that" approach to something a little more methodical and diagnostically biassed, but maybe that's hoping too much.

watna

Hi Womoma, I found this thread quite interesting and I really do empathise with your illness and your struggle for diagnosis. I had post viral fatigue syndrome a few years ago. It wasn't nearly as severe as ME or any symptoms you or others mentioned. It came on very suddenly and I was just exhausted, mentally drained and got every illness going. It only lasted about 2 months which I'm very grateful for and I was lucky that I was in College so could go to select lectures and take it easy otherwise. I was getting blood tests every few days with nothing coming back. One day I just woke up feeling better. I went down to the doctor for my regular appointment and the minute I walked in he just knew I was feeling better, he said he could see it in my eyes because I had lost that dullness in the eyes that sick people get. I'm perfectly healthy now, I just get tired a little easier than other people and my immune system is still slightly weaker, I catch everything going.

What I remember from that time is the lack of sympathy from everyone but my mum and my doctor. People (especially my always healthy friends) just could not understand and said things like but why can't you just do it. The unsaid thing being that I was lazy and imagining things. It just made me feel much much worse. I fully sympathise with you in that other people can't understand the tiredness. I remember the feeling and I do sympathise. I wish you all the best in your hunt for a definite diagnosis and I do wish that more doctors were understanding of ME/post viral fatigue syndrome and people in general understood it more so that people suffering from ME didn't find their lives made even more difficult.

Iamphoenix

Hey Dec- remember me? its Lois. Didnt hear from you in ages!!!
I read all these posts with interest- and just to update- I took strong anti biotics for 9 months,after seeing a Lyme doc in Wales- finished last Christmas and have been in the main off them for this past year. if I get an infection and the symptoms come back I have to go back on the tablets.
I know its not a cure, but my quality of life has really improved a lot. Still have to take frequent rests, and make sure I eat well, no alcohol(!) but have been one of the lucky ones. I was out with a traction kite this summer-can you believe it?
If anyone is looking into the Lyme aspect, there is a group on yahoo called http://health.groups.yahoo.com/group/Eurolyme -theres a lot of info on there for anyone interested. A lot of folk on there with the M.e. diagnosis are getting treatment for Lyme.
How are things with you at the moment Womoma? And hows your Mum?
Lois

condra

LOIS!!!

Welcome to boards.ie! Good to hear things are still going well for you. Generally, this year has been the worst for me since the first year, but at the moment Im not too bad. Since getting ill 6 years ago, November and December have always been tough months.
Mum is great thanks. She wrote a book, thinks shes the next Meave Binchey

Iamphoenix

DEC!!!!!!!:eek:
Well i dint hear from you in ages- really sorry to hear you are so s***e, I always seemed to be down with everything going this time of year- i think our immune systems are really poor and of course we cant fight infections at all well.
You'd be sick of it altogether especially when all your friends are out and doing, worl seems as though its moving on without us.

Well done for your mum, its great she wrote a book- was it fiction or non. I think it takes greatforce of will to finish a book, never mind starting it.
Dont think I could do it.
Will pm you later.
Lois

condra

Non -Fiction. About her stroke. Yeah sure Ill catch up with you in PM later.

Iamphoenix

Sorry to hear about that- didnt know she had been so ill..
L.

tbh

on topic from here folks

Corruptedmorals

I didn't know CFS could last that long! My sister has it, we were told it would eventually clear up by itself. She's 23, and started feeling sick in May. She was diagnosed first with an underactive thyroid, hypoglycaemia (sp?) and M.E in about August..it was brought on by glandular fever none of us knew she had. She has good days and bad days, when she's good she always ends up overdoing it, like you said, and bad days where she's too weak to move anywhere. Her sleeping patterns are disrupted again atm, doesn't sleep till 3 or 4 in the morning. She hopes to go back to work in April..please God.

Our GP is very good and while not 'quick' to diagnose ME..the test results were very clear..he's been supportive from the start.

Thank you for your post. It was quite upsetting for me to know how long it can last, so I can imagine how you yourself feel.

kangaroo

The ME-like syndrome that follows Glandular Fever/Epstein Barr virus tends to have a better prognosis and shorter recovery time - a large percentage recover with 2 years.

BluePaddy

This kind of sums it up......

http://www.youtube.com/watch?v=r0w9-eQ_fKQ

sorella

Thank you for ths thread.

I was misdiagnosed as being mentally ill/nerves almost 40 years ago now. And treated accordingly of course:)
It was in the UK.
In the days when valium etc were the cure alls
They call it Involuntary Tranquilliser Addiction.

And anti depressants etc etc etc.

It took a year in total reclusion to get myself off all meds; by then my trust in drs was extinct.

Blessed by the resources the internet provides of course.

The good thing was that thet decided I was too weak/bad a person ever to work again so I was on disability permanently. Never any problems there..

The real illness was and is M.E. Classic onset. Classic symptoms etc In all their terrible reality. Classic misdiagnosis and mistreatment.

When finally less than ten years ago I had my medical records set right, I left the UK. Never to return.

I find Ireland more accepting simply.

By the way, do you know the Irish M. E site?

And by then I had learned to live with and within M.E. And I had also stopped expecting anyone to understand or know what the suffering was and is.

So few do and I grew weary of banging my head against a brick wall

Now I am of pension age, and living a deeply fulfilling life always. Within the illness

And very self-sufficent.

I rarely see a doctor. The abuse I suffered in the UK over decades. Rarely use meds and I know what works for me in OTC terms.

As i know what foods help and which do not.

My environment is simple; no chemicals etc. It all becomes second nature.

If i need a day in bed, I take it. If I can walk a way down the lane, I do that. Always hands are busy with work for others now. So much need in this world.

And I enjoy life greatly.

Whatever we have as health problems, life is still precious and beautiful as so many here show so wonderfully.