A New Level of Fatigue? Get Your Bloods Checked!

 

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Those of us used to living with Pots and EDS will know that fatigue (sometimes extreme) comes as part and parcel of these conditions. However in the last year and a half to 2 years I had developed a new level of fatigue that had just crippled me! I pretty much needed to sleep most of the day. I got up, had a shower, eat breakfast and by the time 4 hours had passed, my body was crying out for bed again. Every 4 hours or so I would need to sleep at least 2 hours and this continued throughout the day until I went to bed at night, it got so bad that my husband was beginning to miss me as I was always in bed!

I had my meds reviewed, I was on a new diet which had helped my gut related symptoms hugely but nothing I tried would help my fatigue.

I decided to get my bloods checked in July this year and promptly found out that I had anemia. My vitamin B12, Folate and Vitamin D3 were all very low and contributing to my major fatigue and related symptoms.

My doctor put me on a regime of B12 injections, once a week for 5 weeks then once every 3 months there after to maintain my levels. She put me on D3 liquid supplements and also on Folate tablets once a day for the next 6 months or so.

After my 5th injection which is due the next time I go in, they will do more bloods to see how my levels are doing and we can maintain accordingly after that.

What are the symptoms of Vitamin B12 Deficiency?

“Vitamin B12 is needed by all cells of the body in order to allow them to multiply. A shortage of vitamin B12 mainly affects red blood cells, because millions need be made every minute. A lack of red blood cells can lead to anaemia. The common symptoms of anaemia are tiredness, shortness of breath and palpitations.

There is also a type of B12 deficiency anaemia caused by lack of intrinsic factor. This is called pernicious anaemia. A shortage of intrinsic factor means that B12 cannot be absorbed properly. Pernicious anaemia has the same symptoms as anaemia, including tiredness, shortness of breath and fatigue. Other symptoms of anaemia can include:

  • soreness of the tongue,
  • loss of weight,
  • pale skin, often with a lemon tint,
  • intermittent diarrhoea,
  • menstrual problems, and
  • poor resistance to infections.

If the deficiency goes on too long, the nervous system is liable to be affected, causing:

  • tingling of the fingers and toes,
  • muscle weakness,
  • staggering,
  • tenderness in the calves, and
  • confusion.”
  • – HSE.ie/b12deficiency

 

What are the causes of Vitamin B12 Deficiency?

” The immune system normally makes antibodies to attack bacteria and viruses. Pernicious anaemia is caused by an autoimmune disease, which causes the immune system to make antibodies against other parts of your body. In pernicious anaemia, antibodies are formed that attack the stomach lining and damage the cells that produce intrinsic factor. This stops intrinsic factor from attaching to B12, and so the vitamin cannot be absorbed into your body.

Another cause is where the bowel cannot absorb the vitamin B12 because it has been damaged by disease (e.g. Crohn’s disease) or shortened by surgery (usually to treat bowel disease). If the bowel has been shortened by surgery, these problems can contribute to a condition known as short bowel syndrome. Short bowel syndrome is a group of problems affecting people who have had half or more of their small intestine removed. Common symptoms are diarrhoea, cramping and heartburn. Some people become malnourished because their remaining small intestine is unable to absorb enough water, vitamins, and other nutrients from food.

Occasionally, some people who follow a vegan diet may become deficient in B12. This is because B12 is not found in vegetable foods (such as fruit, vegetables and grains). ” – HSE.ie/b12causes

 

So have the injections and supplements helped so far?

I definitely found the vitamin B12 injections and the D3 especially were really good initially as they would give me an initial burst of energy for a day or two but recently I haven’t found them as great, but, I am sleeping less now which is great, however, I still need a lot of sleep throughout the day.

Now I get up in the morning and can stay up until evening time around 6 or 7 pm where I have to go to sleep for about 2 hours or I simply wont feel refreshed enough to get up before 2 hours. Then I get up at around 8 pm and can stay up until we go to bed for the night. Sometimes I may need another nap in the evening but usually I just go to bed for a nap now just once in the evening which is a huge improvement and has given me more of a life back.

So, no it’s not a cure by any means, but I believe if I didn’t get my bloods checked at the time that I did, I would still be sleeping my brains out all day so my simple advice to you is, if symptoms change and you notice a new level of fatigue that you haven’t experienced before then there surely is something causing that, don’t just automatically put it down to your EDS or Pots or regular diagnosis, if it’s new get it checked out and I would recommend getting your bloods checked. At least they are something that can be fixed and managed and may play a huge role in your level of fatigue.

Just be aware, explain to your doctor what is happening with you and ask for bloods to cover anything that may impact fatigue as I was told that Vitamin B12 and D3 bloods need to be checked for separately to regular bloods. So just for you to be aware of that 🙂

Best of luck,
Lette 🙂 (Fainting Goat)

 

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My Personal Diagnosis Story; Updated 2018

 

Hi, I am Lette and I have EDS, Pots, Gut Dysmotility, Neurogenic Bladder Dysfunction, Severe hearing loss and a host of secondary complications to all of these. I will try and keep this as concise as possible but I feel it is still going to be a long post, please bear with me!

It all started on a Tuesday morning in April 2011. After a lifetime of silly ‘Mickey Mouse’ symptoms that didn’t lead to anything conclusive, I just thought I was feeling a little under the weather.
I got up to shower and get ready for work and as I was coming out of the toilet, I suddenly felt really weak, faint and overwhelmingly dizzy. I called out to my husband who got to me just as I lost consciousness and he caught me before I hit the ground.

We didnt know what was going on, My husband was brilliant trying not to panic but everytime I would come around and try to stand I would lose consciousness again!
He got me to lay on the bed while he called the doctor and got advise to either immediately call an ambulance or get me to A&E straight away.

We opted not to wait for an ambulance as it would be faster to drive me directly to the A&E.

Long story short I ended up staying nearly a month in the hospital under an initial doctor who tried some tests but ultimately seemed to be very dismissive of me and in the end told me to get up out of bed and just ‘walk it off, and you’ll be grand’, great advice to give to someone who was shortly thereafter diagnosed with, ‘a very impressive case of Pots’, after this we had to demand a second opinion knowing something was seriously wrong with me. I couldn’t sit or stand upright without losing consciousness and I was just told to walk it off?!

Needless to say the second opinion doctor took my case very seriously, did many more tests, one of which was a Tilt Table Test and we discovered that I did indeed have Pots and NCS (Neurocardiogenic Syncope) but the cause was unknown. I was medicated heavily for my issues (very low BP, High HR, Nausea, Joint pain, Sweating, Syncope sometimes with respiratory arrest (without breathing), given some lifestyle advice like eat more salt and drink plenty of black coffee to raise blood pressure and sent on my way.

The following months after my Pots diagnosis I was continuously being admitted into hospital and fighting to find a cause for the Dysautonomia, In October 2012 I was diagnosed by a Reumatologist in Cork that I had Ehlers Danlos Syndrome Type 3, Hypermobility Type, which in turn would be the organic cause of the Pots.

My symptoms at the time were progressively getting worse, I was fainting very regularly throughout the day sometimes without breathing which in the worst of cases led to new seizure type activity and short term paralysis in my legs causing long lasting neuropathy. I was getting severe headaches and excruciating pains in my joints, very low BP, High HR, Dizziness, easy bruising, Blue Sclera, Excessive Fatigue, severe nausea and vomiting with gut related pain.

This happened for months off and on without any reprieve until April 2013 where I slowly improved at the start of the year, well enough where I decided to go back to work for Apple Computers from home.

Everything was going amazing until my Pots started acting up, sometimes I had to put people on hold as I hacked into a bucket! The pain in my pelvis, hips and lower limbs became so much worse that crutches no longer supported me well enough.

By August I was in a wheelchair, In September I was admitted to hospital for 11 days for investigations and pain management. The specialist advised that I didn’t return to work.

Things went downhill fast with my health and I soon learned that I would have to fight the HSE with some of my issues. I had to do my own phone calls to start Physio and Occupational therapy as nothing was being done from the hospital side. My Consultant who looked after me for Pots also had some problem with the diagnosis of EDS that I got in Cork, they never took it seriously and tried to convince me that I didn’t have EDS but I only had ‘Benign Hypermobility’, which they said would have no bearing at all on my health or any of my issues!

In July and August 2014 I was at my worst health wise. I was admitted to hospital after being rushed into Resus via ambulance after having a very long seizure. I was admitted again for nearly a month where I ended up in ICU and HDU (High Dependency Unit) because of these seizures. The consultants sent me to Beaumont Hospital in Dublin via ambulance again to rule out Epilepsy of which all was clear thankfully and they put the prolonged seizures down to a major reaction I was having to the antiepileptic drugs they had me on to manage them, I was promptly taken off these drugs and in turn the seizures stopped almost immediately. It looked like the first ever seizure I had may have been a once off dysautonomic seizure caused by lack of oxygen and it was the antiepileptic drugs they had me on that made matters worse.

It was during this time that I decided something had to be done to try and help myself. There are no EDS specialists anywhere in Ireland and the closest place there were any was in London. I started a GoFundMe campaign and slowly raised enough to go to London and meet a Professor in rheumatology who specialised in EDS to get a proper diagnosis that would confirm to my consultants (and myself) that I did in fact have EDS and to get some sort of treatment plan that my consultants here could work off. This trip was a success. I met Prof. Rodney Grahame, got an official diagnosis, a treatment plan for my consultants at home and it was only after I got my letter from Prof. Grahame that my consultants started taking my diagnosis seriously and actually followed the advice given on the treatment plan.

Things started running smoothly for a while with my treatment, I was getting regular physio and occupational therapy, regular pain management and outpatient appointments to keep an eye on everything.

Slowly though, in 2015 things went downhill again and I started having severe gut related trouble. Over the course of the following couple of years I was in and out of hospital constantly, I lost a huge amount of weight, couldn’t eat anything without nausea or vomiting, got extremely weak and fatigued and my seizures returned after a year of being dormant, my consultant at the time wanted to operate on my gallbladder thinking that may be the problem with my gut. Other than that, he admitted to me outright that he didn’t know what to do or how else to help me and advised I seek help elsewhere if I knew where to look.

In 2017 I had to fundraise again to return to London to meet another Professor who specialised in EDS and Gastroenterology, Prof. Aziz. Thankfully since this consultation in London and following the advice he gave me I have improved greatly, with regards to my gut trouble at least.

I still get serious symptoms and there is no cure for EDS. There are no EDS specialists in Ireland and it is clear from my, and others diagnosis stories that there is little help within the health system in Ireland. We are already fighting illness, we should not have to also fight the health system for treatment that should be readily available here and we should not need to travel or worry about organising funds to do so when we are in this state and yet, we need to or we will just be forgotten about.

I worry that my symptoms will continue to flare and get worse as time goes on. I worry something serious may happen and that the doctors here may not be able to help me or others in this situation if that happens. My story had some major up’s and down’s and yet I am not the worst I have heard. There are others out there that have had much worse experiences than I have.

We seriously need an EDS specialist here in Ireland to help us. I am forever surprised by the constant stories I hear of peoples GP’s and hospital consultants not knowing what EDS is. It is 2018, is it really that far fetched to imagine having a consultant here that specialises in EDS or at least some training for our doctors? I think not! #EDS4IRE 

Lette

 

New Robot Ears!

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So on Monday this week I finally got fitted for my new hearing aids, they are a pair of Phonak Nathos S+ aids with moulds to fit my ears and programmed for my hearing loss which the lady said was in the region of 100db of a loss in both ears which is huge I thought and a dis-improvement on my last tests which were far too long ago!

I have only worn them for a couple of days now and I find them excellent! The sound is powerful and natural enough sounding. They are not heavy in my ears though they feel slightly heavier than my last aids but not by much.

The moulds are silicone and softer than my last ones but a slightly tighter fit so take a little getting used to as after wearing them all day yesterday I found they hurt the ears just a tiny bit, more like got tired from wearing them all day. Once taking them out though my ears felt like normal again so its just a matter of getting used to them I think.

The hearing aids have little musical earcons when they turn on, which is pleasant to hear and when you use the volume switch they make more earcons to tell you when you have gotten to the highest or lowest level it will give you a slightly different earcon but it is all very intuitive.

The best thing about them is they are programmed to work together, so if I change the volume in one of the aids, they sync and the other aid will adjust the level to the same as the aid you have adjusted so it saves you having to change the volume on both ears.

Thats about the brunt of them I think, I was called to the consultants appointment in the University Hospital Limerick on the 6th of June where I was given an in depth hearing test and referred to the hearing aid clinic. Then within a month I got another appointment for The Hearing Aid Clinic for the 30th August for another hearing test and fitted for the moulds, then I was called back there within the month again for the 9th of October to actually pick them up, get them fitted and programmed so that was nice and quick really.

 

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I had my last pair of hearing aids for over a decade! They were a pair of Oticon GB50’s analog aids and they were my daily ears for years! They were in dire need of an upgrade at this stage! The moulds and tubing had yellowed and hardened and the sound wasnt powerful enough for my hearing loss as it has gotten so much worse over the last few years so the upgrade was badly needed.

I wrote before about my hearing loss, underdeveloped Eustachian tubes and middle ear disease, which has lead to 12 operations on my ears, you can read all about that here.

I have often wondered if all this hearing loss is EDS related as I have had hearing problems all my life since I was born, much like the EDS so I have to ask if they are connected, I am only curious on this as there is no proof to say that they are linked at all. However from reading many forums and pages online it seems some hearing loss can be attributed to EDS but it is not definite only anecdotally.

Still an interesting question though.
Have YOU EDS?
Do YOU have any sort of hearing loss or ear problems?

Please let me know in the comments below, I would love to hear about this from more people, just out of curiosity!

Thank you for reading folks, back soon with more news!

Lette (The Fainting Goat!)

 

Woo! Shortlisted for The V By Very Blog Awards Ireland 2017

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I am delighted to announce that I just got an email from V by Very Blog Awards Ireland 2017 and Irish Dysautonomia Awareness, this humble bloggie, has made the Shortlist for 2017.

We are now onto the next round ‘The Finalists’ where the blog will be judged on:

  • How engaging, entertaining and informative is your writing?

  • How consistent is your blog? Is every nook and cranny taken care of?

  • How do you compare to other blogs? What makes you unique and stand out?

     

I just want to take this opportunity to firstly thank everyone who put the blog forward in the first place and also thank you to the judges who deemed the blog good enough to make it this far this year, I am delighted.

Thank you all once again and here’s to the next round!

 

Lette (The Fainting Goat)

 

 

 

Longlisted in The ‘V by Very’ Blog Awards Ireland 2017

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YEAYYYY!!! This humble little bloggie has been Longlisted in the ‘V by Very’ Blog Awards Ireland this year under the Health and Wellness category, THANK YOU ALL SO MUCH for voting and putting this blog through for this round, I hugely appreciate it, thank you!!

Next comes Round 2 the Shortlistings where the blog shall be judged on:

Overall Blog Design
The Reading Experience
The Knowledge of the Writer
How Responsive it is on PC, Mobile and Tablet

hopefully we shall make it, here’s hoping!! Fingers and toes crossed!!

Thank you all once again ❤

Lette (Fainting Goat)

 

Report From Prof. Aziz

I received a full report of my visit to Prof. Aziz on the Monday after meeting him that Saturday. It arrived very fast and it covered everything and a few things I had left out in my last blog post about the trip, so I said I’d go through it now.

In the report he outlines everything he went through during the visit.
He goes through my Diagnosis, My investigations to date, Current Symptoms, Medications and then he goes on to outline the visit in detail. Listing everything we had gone through and explaning the examinations he had done.

The main bulk of the new information about my abdominal pain is as follows, from the report itself:

On examination in addition to features of joint hypermobility she had severe allodynia which extended all the way around from the right side of her abdomen to the back, there was superficial tenderness over her abdomen, she also had severe tenderness on the left side of her abdomen, although less so than on the right side. She had evidence of angular stomatitis.

I feel that at least part of her abdominal pain is related to the anterior abdominal wall and she has a number of tender trigger points and there may be an element of anterior cutaneous nerve entrapment syndrome. The possibility of spinal nerve root compression causing pain, particularly all the way from the right side of the back to the abdomen also needs to be considered.

She has features of small intestinal bacterial overgrowth and likely has vitamin and mineral deficiencies. We also discussed the side effects of the drugs that she is currently taking, particularly opioids etc which will significantly affect her gastrointestinal function.

I have added links to explain all the new terms in there so be sure to click in and read those, I know I had to look them up!

His recommendations then are as follows:

  1. Slowly reduce Opioids as they are slowing gut function. Stop, Reduce and increase some medications as explained during the appointment.
  2. For small intestinal bacterial overgrowth I have suggested a prescribed antibiotic twice a day for 2 weeks following which she should take a probiotic.

  3. I would suggest that she sees a senior pain management specialist locally to consider splanchnic nerve blocks but it may also be helpful for her to have a spinal MRI of the thoraco-lumbar spine to make sure that there is no nerve root pressure.

  4. I have given her detailed dietary advice and have generally suggested a diet low in sugar and grains but high in white meat, vegetables and healthy fat such as olive oil. Overall I have also suggested that she should reduce the histamine content of the foods that she eats and have suggested some resources that she can look at. I have also suggested vitamins and minerals such as vitamin C, B complex, omega 3 and chelated magnesium.

That outlines the most of it, the next thing now is to make sure my doctors here get a copy of the report so that I can get the nerve blocks and other bits and pieces sorted out so I can properly start this diet.

I have started the food related side of the diet already and find it good, I just have to sort out the probiotic, vitamins and minerals now to go along with it.

My GP got a copy of the report this morning and my next appointment is for my Pain Specialist next Friday and I will fill him in on what needs to be organised regarding the nerve blocks and the MRI.

Thats it for now, I just wanted to fill you all in on what the report said. Thanks for reading this humble little blog and if you are out there reading, leave a comment to say hi! 🙂

Lette (Fainting Goat!) xxx

London Update Soon!

Just back from London after meeting with Prof. Qasim Aziz Neurogastroenterologist who specialises in EDS. It went super well and I am delighted with what he had to say to me but I am feeling so very ill after traveling (I know it was only one night but I’m not able!) I will get to the full update shortly.
Just wanted to let you know it’s on it’s way I just need a little rest for a few days, Ill get to it! 🙂

Cheers Folks,

Lette (Fainting Goat!)