A Question To All ME/CFS Suffer's

[AndrewB]

Hi, im andrew,

I live in the UK. Im 30 and im new here
A year ago over about a week i developed the following,
and went into Hostpital ;

01-Fatigue so bad i was unable to move or walk
02-Pain in my middle and lower back, and pain accross my chest
03-Difficulty breathing, i had to take short breaths
04-A tight feeling in my throat, making it hard to swallow
05-Night Sweats
06-Noticable twitching in my Legs and Arms
07-Numbness in my feet
08-Insomnia
09-Constipation
10-Short term memory problems

I was released from hostpital after four days as my vital signs were fine, even though i was still unable to walk such was the fatigue, they gave me a clean bill of health.
At home, i spent a hellish three months with these symptoms before they slowly reduced from being debilitating, to a level where i could function in terms of moving about my home a little more.
And by January 2011, i started to feel myself again.
My GP prescribed me zopiclone, and tramadol for the insomnia and pain, but he said he believed i had pleurisy.
Anyway, lots of bloodwork and XRays and CT scans later, nobody could tell me what was wrong with me.
About four weeks ago i started again with the really bad fatigue and all the other symptoms. Ive been refered to a 'General Specialist' but he has now twice postponed my appointment by a month.
Im really worried and ill, and a bit scared, i dont know what i have, ive never had any illness before, and this feel's sometimes, like my body is ready to give up.
My GP thinks im depressed, but im just not feeling fit enough to argue it out with him.
Can anyone please advise if what ive got sounds like ME/CFS, and if so, how can i get my GP to try and treat me ?

Regards

Andrew

 

[WillowJ]

hi, Andrew, welcome to Phoenix Rising.

There are two critical questions to ask to help decide what you might have. First, what have you been tested for? It seems like you have some kind of infection; have they done testing to try to figure out what it is? If not, try to get a referral to infectious disease clinic. Maybe they can find an active infection they could treat.

Secondly, I know you aren't feeling well, but if you do a little more than usual or overextend yourself for any reason, how are you the next day or the next several days?

When the doctor says "depressed" but you think you aren't, this is code for the doctor hasn't the faintest idea what's the matter with you. You have two choices (I think they gave you the choice to change GPs in the UK now, so I think you have two).

1) You can stick with your current GP, see what happens, maybe ask for a depression survey (don't worry, if you aren't depressed, it will show that on the result and you may be able to prove to your doc that this is not the solution; on the other hand if you are actually depressed, even secondary to your underlying disease, you may want the depression treated... just beware of doctors who may decide depression is your only problem). You would only do this if you actually thought your GP was looking at options and actually trying to treat you.

2) Get a different GP. Change as many times as you need to, in order to find one with basic compassion and a curiosity to figure out what's wrong. You do not necessarily need one who understands the disease you have or suspect you have; just one with enough respect for you, science, and himself/herself, to be able to say "I don't know" when necessary (rather than making things up, like, "must be a mental/personal problem"), and to at least treat symptoms, make referrals when that seems warranted, order whatever tests seem indicated, and generally be supportive.

I hope that helps.

willowj

 

[currer]

Hi Andrew,

Welcome too!

Willow is quite right, It is dangerous to diagnose oneself.
You need to take courage and explain how you are dissatisfied with your doctors approach and try to work with him/her to come to a clearer diagnosis.

I'm sorry to hear you are going through this - are you still well enough to be able to work?

There are a number of books on ME, but other illnesses need to be properly excluded first.

Dont let your doctor put you off.

 

[heapsreal]

Hi Andrew, welcome to the club,

Yes be careful of the docs that say its depression, only. The illness can be depressing and frustrating but it isnt the cause. Maybe see a second doctor just to give to a second opinion and a physical, dont mention cfs/me to them though or they will put the blinkers on and label you a nutter. If u get the all clear then search out for a 'good' me/cfs doc that believes this illness is infectious/immune system related, other Brits on here could possibly help u out with docs. Keep your original doc on side as they do come in handy for prescriptions etc, i find it best not to mention any specific illnesses but just your symptoms to him, that way he can help you in that department without judging you too much as having a sickness belief illness.

What you have mentions sounds to me like you have cfs/me, the good thing about that is times seem to be changing in reguards to treatments etc. If you had this in the 1980's you would probably be worse off as u would have had the condition 30 years with little treatment, there is hope on the horizon.

cheers!!!

 

[AndrewB]

Hello,

"There are two critical questions to ask to help decide what you might have. First, what have you been tested for? It seems like you have some kind of infection; have they done testing to try to figure out what it is? If not, try to get a referral to infectious disease clinic. Maybe they can find an active infection they could treat"

Hi Willow,
When in hostpital, they took one blood test, and a few urine tests. The bloodtest came back with slighty high white blood cell counts, and slightly low potassium levels.
I was given some potassium tablets to desolve in water for the six days i was there, and they did nothing about the white blood cells being on the high side as my vital
signs were fine and they thought me having trouble passing stools was the cause of my fatigue. They never actually asked me about the pain and i really was too tired
too talk (sounds like im being dramtic about the fatigue, but at its worst, im reduced to a stationary mute.
So they released me in that condition, i was very scared, i did think it'd kill me, again sounds dramatic, but id never had anything wrong with me before.

"Secondly, I know you aren't feeling well, but if you do a little more than usual or overextend yourself for any reason, how are you the next day or the next several days?"

Completely and utterly fatiuged. I cant lift weights now, not even really small ones, i cant run, jog, anything like that, or the fatigue returns. Toward the end of last year it was only complete bed rest for several weeks that allowed me to function at about 60% of my former self.

Hi currer,

"are you still well enough to be able to work"

I tried at the start of this year to go back, but i wasnt fit enough. And in this current condition, answering a few email's each day is all i can manage.

Hello Heapsreal

"What you have mentions sounds to me like you have cfs/me, the good thing about that is times seem to be changing in reguards to treatments etc. If you had this in the 1980's you would probably be worse off as u would have had the condition 30 years with little treatment, there is hope on the horizon"

Im glad that research is being done, id never heard of the condition until a friend mentioned to me that my symptoms could be one of a dozen things, and ME was one of those.
As it stands, after all the X-Rays, the CT Scan and bloodtests this year ,that came back 'normal' im now in the hands of a specialist at the hostpital, who has put my appointments with him back by months.
I forgot to mention, both last year and this year ive been feeling a bit like throwing up, and eating is difficult as a result.

Andrew

 

[ukxmrv]

Where do you live Andrew in the UK and would you be able to afford to see a private doctor to rule out ME and CFS?

It's normal to be given the "run around" like you described. The UK has allowed most of their ME doctors to retire or die without passing the information along. There are a few left but it is a postcode lottery to see one on the NHS. You are more likely to be referred to a "CFS clinic" where they will treat this as a psychiatric or lifestyle disease. Then you will be left to rot with no real help, advice or treatment.

I've had ME (acute viral onset) for nearly 30 years and survive now largely without care from the NHS. There are a few knowledgeable doctors about but it can be hard to get an NHS appointment or expensive to see. All the good doctors that I saw previously have either gone into a private practise or retired or died.

There are lots of other things that could be causing your symptoms but the NHS is so hit and miss that most doctors I have seen wouldn't know what tests to do to rule things out and what to look for. You could spend years with the NHS doing tests slowly and then trying to dump you in a useless "CFS" or put you under the care of a psychiatrist. It's not unusual for people to be misdiagnosed with CFS.

It's a national disgrace.

You will need to take control here, research the topic and find the right doctors.

Good luck.

 

[AndrewB]

England, NHS, CFS Clinics, Specialists, Diagnosis.

Hi ukxmrv,

Unfortunately im not in a position to see a private Dr, but that could change if i could only get well enough to work for at least six months again.
I live in manchester england, and there is a doctor responsible for creating the Perrin Massage which he claims cure's people.
However, even if i did have the money to see him, id be very unsure about his ability to help me.
The last routine appointment i had with my NHS GP was about 5 weeks ago, and he still said he thinks there's an element of this thats in my mind.
When i hear that i want to scream at them, but i can barely whisper much of the time.
He has at least admitted, after a wasted year, that he cannot treat me, and im expecting the same from the specialist, unless something shows up
in my tests.
So far, nothing has shown on my scans, x-rays, urine samples or bloodwork, and it doesnt seem to take long for doctors to lose interest.
What im worried about is not getting any dignosis, as strange as it sounds, even a wrong dignosis would be of some benefit, if only to ease my mind a little.
Ive been reading a lot of people's posts on here since i arrived yesterday, and at times reading the forum boards is like looking in a mirror.
Im thankful that we have an NHS, even if its not being funded as much as it should be, the people living in countries where they either pay their medical bills
or dont get treatment must be horrible.
Id like to know something though, i wonder how many people have this illness or similer fatigue related problems in third would countries, where people arent exposed
to immunisation's. ?
I also saw a piece on the The Lake Tahoe 'outbreak' in the mid 80s, and saw how the medical experts of the time decided that was just mass hysteria.
Im new to all of this, even if ive been ill for a year, and the more i read, the more confusing it all becomes.
If this and related illness' are infact viral based, why arent ME sufferers given antiviral drugs ? Or has this already been done and not been a success ?
I also read somebodys blog on here that mentioned japan are putting lots of money into research, so if anyone knows any links to keep informed on
those developments id much appreciate it.

One thing i would like to say, im really happy to have found this site, its good to know your not alone in this, the simple creation of this website
is a wonderful thing and the admins and creators should be extremely proud of themselves

Andrew

 

[Carrigon]

Andrew, make them run thyroid antibody tests on you. Some of what you described sounds like a Hashimoto's attack. They will not run the antibody tests unless you really insist on it. Regular thyroid tests will not show it.

The high white cell count, stop microwaving any foods or drinks, and don't eat anything that was microwaved. Trust me on this, it's low level radiation poisoning and we all have it now. You spend enough years with the microwave oven, you get a high white cell count, fatigue, and a million symptoms.

 

[AndrewB]

Hi Carrigon,thanks for the pointer,
i looked into that, i read this link ;

http://www.stopthethyroidmadness.com/hashimotos/

its true a lot of my symptoms fit that brief, the only thing that doesnt apply to me is the 'up' and 'down' sensations, when im ill like i am now, i only feel fatigue until the fatigue has become less severe, but i will ask my specialist about an anti-body test, infact, i'll insist on it.
also this link doesnt mention soreness all around the body, i get acute pain in my chest and back, and around my stomich as if i had IBS.(my friends wife has IBS and i know those symptoms and when i described my trouble passing stools and the discomfert i get in my belly and sides, she said that sounded just like her.
the worst two symptoms are the laboured breathing and the fatigue.
i see the specialist on the 24th of next month.
however, i do get panic attacks, especially in cars, but they only developed after my being ill last year.
what are you exact ME symptoms carrigon ?

Andrew

 

[Countrygirl]

Andrew, are you able to travel by train at all?

A close friend of mine is a doctor who spent years as an ME specialist and she might be willing to give you a private medical to decide if you have the illness and write to your GP.

C.G.

 

[ukxmrv]

Hi Andrew,

I know a few people who have seen Perrin but although some say that they are helped slightly - no cures.

What I was thinking of was something more mainstream. By choosing a doctor who is respected in the NHS you can sometimes get through to your GP a little better.

I know someone in the Manchester ME group and they recommends Dr Patrick (sp?). He was the local NHS ME doctor before the "CFS clinics" took off and replaced some of the old doctors with Psychiatrists and those with sympathies.

Sorry I've not seen him myself and I don't know where he works. I'll try and find out and post here again. You may be able to get an NHS referrel to see him.

 

[AndrewB]

hi countrygirl,

I can certianly travel by train if required. Id need to get there by car and helped to the station by family, but i could definately do that.
Id be over joyed if your friend would do that.

Andrew

 

[AndrewB]

Hi ukxmrv

Id love to have a consultation with him, if you hear anymore about id be really happy to see him.
And thank you so much for the answers, everyone, you've all been kind and understanding.

Andrew

 

[Carrigon]

Hi Carrigon,thanks for the pointer,
i looked into that, i read this link ;

http://www.stopthethyroidmadness.com/hashimotos/

its true a lot of my symptoms fit that brief, the only thing that doesnt apply to me is the 'up' and 'down' sensations, when im ill like i am now, i only feel fatigue until the fatigue has become less severe, but i will ask my specialist about an anti-body test, infact, i'll insist on it.
also this link doesnt mention soreness all around the body, i get acute pain in my chest and back, and around my stomich as if i had IBS.(my friends wife has IBS and i know those symptoms and when i described my trouble passing stools and the discomfert i get in my belly and sides, she said that sounded just like her.
the worst two symptoms are the laboured breathing and the fatigue.
i see the specialist on the 24th of next month.
however, i do get panic attacks, especially in cars, but they only developed after my being ill last year.
what are you exact ME symptoms carrigon ?

Andrew

Untreated or undertreated Hashimoto's can cause severe pain all over your body, fatigue with ups and downs, feeling like it's hard to breathe, pretty much every single thing you've described. Some of the symptoms can also be POTS, you might want to read up on that, too.
http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome

Most of us with this disease have a combo of several things. POTS, Hashimoto's, Fibromyalgia, IBS, the list goes on and on. And Lyme disease, you might want to get that checked, too.

 

[WillowJ]

Hi Andrew,

It does sound like ME/CFS is possible (although your post-exertional signs and symptoms could be stronger; most of us, in addition to fatigue/weakness/exhaustion, have some combination of flulike aches and feverish feeling, increased trouble breathing, increased balance difficulties, increased sensitivity to noise/light/smell, and similar). Low potassium is a common finding in ME patients.

It's also possible that it's something else. Although it's good they did x-ray and CT (presumably of your chest and abdomen), it doesn't sound like your testing was at all adequate (and it seems like your assessment is that your doctor is brushing you off, which isn't good). Just a few diseases which could cause similar symptoms (and which may or may not have been checked for; some of this you may be able to look and see if there's a relevant test you already had which rules it out) include Gilbert's Syndrome, Grave's disease, rheumatic fever, vitamin b12 deficiency (plus, or caused by, an infection), multiple sclerosis, Myasthenia Gravis, etc.

I'm glad some of the others were able to suggest some doctors you could visit who would know how to diagnose either ME/CFS or something else.

I've had a lot of trouble with doctors losing interest, and I know it's discouraging. Hang in there. I eventually found some good ones who actually care. I have to travel to get to anyone who significantly understands ME/CFS, but I do have some non-ME docs take care of my other health issues, understand ME is a real and potentially serious disease, treat symptoms, and generally watch out for me, within 1/2 to 1 hour's drive.

 

[currer]

Hi Andrew,

Another point - It is important to rest as much as you need, in ME, especially at the beginning of the illness. Dont be tempted by well meaning friends to "push" yourself. This will only lead to relapse and a prolonged recovery time.
You cannot fight ME that way. People who rest adequately at the beginning of the illness are thought to make a better recovery so listen to your body.

The above is on the assumption that you really do have ME of course, which needs to be diagnosed by a doctor, not me.

 

[Countrygirl]

=AndrewB;194560]hi countrygirl,

I can certianly travel by train if required. Id need to get there by car and helped to the station by family, but i could definately do that.
Id be over joyed if your friend would do that.

Andrew

Hi Andrew,

I will contact her today and read out your posts to her. I asked if you can travel by train as she may be able to see you at my home and I live in a village with a rail station which is on the main Waterloo to Exeter line. It would probably be the least exhausting way to travel unless you have someone who could drive you down to the south. It would mean about a three hour journey though.

If my friend can do this, it is probably best to continue this conversation on the phone.

I will get back to you when I have spoken to the doctor.

Rest well,

C.G.

 

[taniaaust1]

Hi Andrew.. Welcome here, it does sound like ME with your symptoms and seeing the doctors havent been able to work it out. As the others have said.. you need to see a specialist for a diagnoses.

 

[AndrewB]

Hi Willow,

I think i mentioned the night sweats, i do get cold/hot in the day, but at night its much worse.
My knee and elbow joints are aching, i didnt notice those aches until i stopped taking the pain
medication my GP put me on, i stopped taken the tramadol because it stops me going to the toilet
and i think that makes it all worse.
My sleep is also badly effected, since i first got ill last year.
Im getting about four hours sleep from a nights rest, i find myself rolling around sweating, i just cannot
get into a comfy position at all.
I had been given zopiclone for sleep, which has a strange effect on me, id say about 45 minutes after taking
it, i feel less fatigued for about an hour, but if i dont go to sleep in those 45 minutes, i think the zopiclone actually
prevents me from sleeping.
My family first thought it was narcalepsy because i was fatiged, they mistook my meaning of being fatigued, im not tired,
im exhausted to the point of not being able to move around, but sleep isnt that easy to come by, and i wake up feeling
the same as when i went to bed.
The main ten symptoms i listed were the ones i thought most imporant.
Countrygirl, should i post a full list of what im going through before you talk to your Dr friend ?
I think i may have left too many things out.

 

[taniaaust1]

You may wish to check this good ME/CFS symptom list out http://wwcoco.com/cfids/bernesx.html