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Author Topic: So fed up and getting very depressed.  (Read 3317 times)
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Suey
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« on: June 23, 2014, 09:54:41 PM »

Hi
I am new to the forum and could do with a bit of support right now.

Eleven years ago I was diagnosed with fibromylagia. Over the years it has come and gone in severity. I have had flare ups and better times. Fast forward to six years ago and something different started happening. I would literally suddenly wake up and feel like I was trying to wade through mud. It would start with a profound sense of fatigue, then the pains came but not particularly in my fibro areas..much more widespread. My joints began to be affected and muscles...seemingly everywhere and I would get muscle twitching especially in my legs. I got increased headaches, woolly headed, unable to concentrate. I got spells like this and they seemed to last three or four months and then disappear. I was always left with a weird kind of dullness and a sense of tiredness generally but able to get out and about for several months and then it all came back full force. This has been happening for six years.

I am currently going through the worst setback ever. This is how I feel:

I ache all over, similar to when you have the flu, muscles, joints etc.
I am getting headaches regularly, almost every day to some extent.
I am so exhausted, sometimes I could cry at the thought of lifting the kettle to make a drink.
When I move around the house, I daren't move very quickly because I seem to get out of breath easily.
I have had bad nausea  every day in the last three setbacks.
I am spending 80% of my time lying on my bed because I just haven't the strength or impetus to do much else.
I have got very depressed this  time.
My acid is playing up real bad and PPIs donlt seem to be helping
I am getting palpitations every time I rise from lying down ( I haven't got posturtal hypertension because its been checked)
Just walking a short distance after lying makes my heart beat very fast and feel drained like my legs are made of paper.
I can't stand noise, bright lights, very hot or very cold temperatures.
Irritable and just want to be left alone.

Do you know? Actually I find it really hard to describe. Its like something toxic has invaded my body. Does this sound like CFS/ME?

My doctor referred me to a CFS clinic but the neurologist who runs it is dragging his heels and hasnt even seen me yet. He seems to think because I have kidney disease I might feel all these symptoms. There's just one problem with that. I have been having these symptoms for six years but I have only had kidney diseaase ( grade 3) for two years and only because I had to have a kidney removed because of cancer. It was an operation induced kidney disease because now I only have one kidney. I don't know what to do next. My doctor isn;t doing any chasing up and I so need to know what s wrong with me. All blood tests scans, x -rays etc have always been okay over the years. I feel like I have been tested for everything and and actually starting to think docs think I am just some sort for neurotic because when I get like this physically my anxiety starts soaring too.

can anyone relate? I would be grateful for any input. Thanks Smiley
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TJ
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« Reply #1 on: June 24, 2014, 10:03:07 AM »

Hi Suey.  Sorry you are having such a rough time of it.  Chronic Kidney Disease (CKD) Stage 3 causes very bad fatigue and can make you feel very unwell but as you say you have had it for 2 years as opposed to 6 years with the fatigue symptoms.  Cancer of the kidney can also cause similar symptoms which maybe why the neurologist is thinking along these lines.  How long before the nephrectomy did you have symptomatic kidney cancer?

Many specialists and GPs use CFS/ME/FMS interchangeably.  There is is no test for CSF and doctors have to exclude everything else first.  Your symptoms sound very similar to mine except you do not mention post exertional malaise (PEM) which is the hallmark of CFS.  PEM comes on 24-48 hours after doing activities which are over your energy level.  PEM usually feels like flu, bad hangover and muscle pains.  This can last a few days, sometimes a couple of weeks with some people and often puts you in bed.

You believe the CKD is not causing your symptoms. CKD most definitely would exacerbate your symptoms if you have CFS.  You say the neurologist has not seen you yet but thinks it is all related to your CKD.  How do you know this? Have you spoken to him on the phone?

Regards,

Talen



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Suey
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« Reply #2 on: June 25, 2014, 08:13:57 AM »

Hi and thanks for your response.
Whenever this starts I have been moderately active. I can suddenly wake up feeling like I have the flu..aka totally washed out pains everywhere etc. For me it's not just a bit tired, it's more like it is an effort to move! It can alao kick off in the day...but it's the sudden nature that alarms me. It's like someone took out my batteries!

The cancer I had was a very slow growing one. They reckoned it had been there for 6 years or so. The urologist at the time assured me that my symptoms were nothing to do with the cancer (I was in hospital being assessed for these ME type symptoms when they found the cancer incidentily). My kidney function (GFR) at the time was 100% normal. As soon as they removed the cancerous kidney my one kidney had a GFR of 46. Not good but to be expected I was told. I managed to get that up to 54 within 18 months. ..grade 3 kidney disease.

I had some blood results yesterday and my GFR is actually 63 now! Thats grade 2 kidney disease so I fail to see how a kidney function thats improving could be causing periodic and worsening ME symptoms. If it was deteriorating and  my ME type symptons were worsening at the same time I could see the concern and logic.

I spoke to the CFS clinician yesterday. She said its notoriously difficult to diagnose ME when a person has a string of other physical problems.
I have had fibromyalgia for 11yrs but with that I got pains in strategic places and defintely not the kind of exhaustion I get now. My fibro pains for all those years were limited to certain body points...this feels like its everywhere. My fibro flare ups, whilst painful did not put me on my bed 90% of the day. I just coped with the pain as best I could and tried to get on with it. Now it all attacks me mentally big time to the point where I dont really want to talk to anyone and certainly I feel unable to leave the house.

I have acid reflux and a hiatus hernia but fail to see the connection there. When I suddenly go downhill though my acid flares up much worse.

I have a long time history of bouts of depression and anxiety disorders . Of course when I feel this ill these get exacerbated but it's all chicken and egg. Who wouldn't react to being rendered almost totally immobile and in so much pain with utter exhaustion?

Anyway she says my GP hasnt even returned the blood test results she asked for back in April. She also told me there was the fact that my GP needs to find funding because its out of our area. I am speaking to the practice manager today.

Tell me this? If this was all to do with kidney disease why are my symptoms so much worse but my kidney function is improving. Why also would I get spells when it feels a bit better and I can attempt at least some normalcy in life.Surely if CKD is causing all my symptoms my symptoms would be permanant and always with the same intensity.
I welcome the views of anyone . Seems to me that ME is easier to diagnose if ANY other health problem is absent. Why is it hard to believe that none of these other problems have anything to do with my ME type symptoms. I even get muscle twiches.
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TJ
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« Reply #3 on: June 25, 2014, 02:50:20 PM »

Hi suey.  I wasn't suggesting it was your CKD causing the symptoms.  I was just trying to explain why I thought your neurologist would see it that way, hopefully to relieve some of your frustration at the system (which incidentally I used to work in).  If the urologist says your symptoms are not caused by the cancer, nephrectomy and CKD (especially as your GFR is improving) then that would be sufficient to rule that out as a cause.

As I said your symptoms are very much like mine.  Feeling like someone has pulled the battery out I know very well.  If you have not done so already I would ask your GP to do full blood work to eliminate anything else.  This will give you more ammunition to approach the neurologist with.

I have regular bouts of depression and anxiety issues but as I know what symptoms they cause specific to me I ruled this out and so did my specialist based on what I had told her.

Knowing how the NHS works, how long things can take and funding problems I opted to see an endocrinologist privately (she specialises in fatigue disorders).  I got my diagnosis of CFS.  She also diagnosed non alcoholic liver disease and a very low cortisol, something my GP had missed even though he had ticked the report to confirm he had seen it. I am now taking steroids.  If you can afford to go down this route, even for just one visit, it is well worth it.  To get one uninterrupted hour with a fatigue specialist was worth the 250.  The specialist report is invaluable if you intend to make a claim for ESA.

Hope this goes some way into helping you get some answers.

Talen


 
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Suey
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« Reply #4 on: June 25, 2014, 03:25:51 PM »

Hi and thanks so much for your response.

I am STILL waiting for a call back from the practice manager at my GPs surgery because I have actually been given false advice from my GP. He didn't tell me anything about getting a request for certain blood tests from the CFS clinic, ( though I have had countless things checked blood test wise these last few months). Those blood test results have not been sent though requested in April. He actually told me that when I see my urologist next I had to ask him if all my symptoms could be CKD. When I asked why, he told me that the CFS clinic thought it could be. We both agreed on that day that it's been going on far too long for that. I am still wondering why HE couldn't make a phone call or write a letter/fax asking this question himself. I don't see my urologist until late July. My Gp has to apply for funding for me to go to the CFS clinic in another district for diagnosis/treatment. This hasn't been applied for to my knowledge....another hurdle because I may not even get the funding. We don't have a neurologist in my town.

The endocrinologist is a good idea. Were there no tests, just questions? 250 sounds little to rule out or rule in the diagnosis of CFS/ME. I am just fed up of lying on my bed day after day and not even knowing precisely what is wrong with me. Do I literally just ring a private endocrinologist up and ask to see him? I didn't even know that anyone except a neurologist could make a diagnosis that would be legitimately recognised. It's got so bad that I have just had to buy a wheelchair to get to appointments because walking any kind of distance is really difficult. If appointments crop up and my husband can't accompany me I am scared to go alone because I feel so very weak - my legs literally feel that they will crumble beneath me. I am also obviously not getting any fresh air or sunlight and I am quite low on vit D ( take supplements), so I thought if I got a wheelchair I could at least be taken out now and again for some fresh air.

Thanks so much for all your help. Smiley
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Suey
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« Reply #5 on: June 25, 2014, 03:43:45 PM »

Interestingly, a completely different GP has just ordered a cortisol blood test that I am having on Friday.
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TJ
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« Reply #6 on: June 25, 2014, 03:57:39 PM »

Hi.  Although ME is regarded as a neurological condition by WHO I don't know of many that specialise in fatigue disorders.  I know some members on here have had bad/unhelpful experiences with neurologists.  It seems that endocrinologists, immunologists and  rheumatologists are more likely to specialise in CSF.  There is a move in the UK for a speciality called Internal Medicine which looks at disease processes rather than organs/systems in isolation.  This is encouraging news for fatigue disorders as they are not limited to one organ/system.

If you self fund you do not need a GP referral to see a specialist.  I just took all my blood results and letters from a consultant physician I had been seeing on the NHS.  The endo ordered more tests but she wrote to my GP asking for him to request them.  I got a copy of the results and took them to my next endo appointment.

I actually came across my endos website on fatigue disorders first then realised she was in my area (Manchester).  Another way to search is to find a local Spire or BMI Hospital in your area.  They have a search facility for specialities.  You just ring, say you are self-funding and they make you an appointment.

Talen
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Suey
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« Reply #7 on: June 25, 2014, 04:10:50 PM »

Thanks very much. I will look into this Smiley  It was a rheumatologist who diagnosed my fibromyalgia.
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TJ
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« Reply #8 on: June 25, 2014, 04:53:27 PM »

Interestingly, a completely different GP has just ordered a cortisol blood test that I am having on Friday.

I learned recently that cortisol is high initially with CFS then falls to low levels.

Let us know how you get on finding a private specialist.
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Suey
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« Reply #9 on: June 25, 2014, 08:59:23 PM »

Hi again.
I have had a good scout on the internet and so has my husband. Seems the only place or professional nearest to us is the very cfs clinic I can't get into. I looked up private assessment for cfs and there were many: even some GPs which surprised me. I didn't know a GP could diagnose it really. We do have an endocrinologist at our hospital, no neurologist or rheumatologist. I don't think I am up to travelling too far that's for sure.  This is turning out to be a nightmare. I have had scans, even a brain scan 2 years ago for all this. I have had so many blood tests, x-rays...you name it I have had it.

At first,  my last GP who has now retired, thought it was all my fibro playing up and I kind of thought it must be too but it all started to feel so different I was backwards and forwards for ages. Then she suggested about 3 years ago that she thought it might have cfs. She did a watch and wait but retired without warning me before making a decision about referring me. I had to change GP and my new surgery is not too good. Two GPs in my current surgery beleive CFS is probable. They are not really going out of their way to help me though.
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TJ
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« Reply #10 on: June 26, 2014, 11:37:30 AM »

Hi Suey.  Yes GPs can have several areas of interest such as women's health, substance misuse, care of the elderly etc.  Several members on here were diagnosed by their GP.   I know Aggie sees a private GP and from what I remember it doesn't cause problems with her NHS GP.  Maybe this is the route that you should go down.  Hopefully Aggie will see this and comment.

If the neurologist is unsure about seeing you on the NHS I don't think seeing them privately would bring a different outcome.

The only other option is to look further afield which I know you are not keen on.

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Suey
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« Reply #11 on: June 26, 2014, 09:33:12 PM »

Hi.
I had a breakthrough with my GP on the telephone today. He said he would send the CFS clinic the blood results they wanted, tell them that through my medical history he knows none of these symptoms are kidney related and ask them to send me an app asap. Well! We'll see!
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TJ
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« Reply #12 on: June 27, 2014, 11:24:21 AM »

 fingerscrossed

 sign0098
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