CFS/ME and Auto Immune

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Catrina26
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by Catrina26 on Wed Aug 14, 2013 12:00 pm

CFS/ME and Auto Immune

Hi my daughter, 16 was diagnosed with CFS 4 years ago. She has made only a slight improvement in 4 years. She is also Type 1 Diabetic has Idiopathic Angioedema, Severe Chronic Gastritis. She wasn't diagnosed for almost a year as they were excluding other problems ie. her C100 and she also presented with a Low C4 and borderline C3 complement in her blood. We have a lot of auto immune disorders on both sides of the family. She still has to use a wheelchair when out and about, gets swelling to her left knee (mri was clear). She seems to have a weak immune system and is recurrently unwell approx. every 2 weeks (as been the case for the last 4 years). Is there a link with CFS and auto immune disorders and will be T1 have an impact on her recovery from CFS?

Catrina26
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Joined: Wed Aug 14, 2013 11:53 am

by Catrina26 on Wed Aug 14, 2013 9:11 pm

Re: CFS/ME and Auto Immune

Thank you. I was concerned because Lupus had been mentioned, she suffers from rash from sunlight, swelling to knee, face etc and some other factors that didn't "fit" into CFS. We were told it can take up to 10 years to manifest itself and for "now" for ANA is negative. She suffers from repeated UTI's, viral illnesses and this has been the case all her life even before CFS but obviously it now causes relapses all the time. We have a lot of history of auto immune on both sides of the family. My niece, 30, has just been diagnosed with CFS and her dad, my brother in law has had ME for 20 years. My other niece has been diagnosed with Hypermobility Syndrome. My daughter has been lucky to see a very good Rheumatologist at a children's hospital but because she is 16 will soon be moved. There are no specialist centers in Scotland so this is a worry.

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Dr Caroline Grayson
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by Dr Caroline Grayson on Wed Aug 14, 2013 11:24 pm

Re: CFS/ME and Auto Immune

From your question I am unsure whether your daughter is under the care of a paediatric immunologist or rheumatologst? With a strong family history of autoimmune disease and joint swelling I certainly would consider a referral for a paediatric rheumatology opinion
The link between CFS/ME and possible autoimmune disease is interesting and I am aware that there has been interest in trying to replicate research carried out in Norway looking at the use of Rituximab an immune modulating drug but this is some way off. I don't think your daughter's diabetes should have an impact per se on her CFS/ME.
Caroline Grayson
Dr Caroline Grayson
Consultant Paediatrician

Catrina26
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by Catrina26 on Thu Aug 15, 2013 4:24 pm

Re: CFS/ME and Auto Immune

Dr Grayson, she is under Rheumatology, has also been seen by Immunology. The year before her CFS her C4 complement level was 15 and C3 was 1.01. The year she became ill (after a viral illness, swine flu vaccination and then admittance to hospital with mesenteric adenitis all within 4 weeks of each other) from which she never recovered from and was eventually diagnosed with CFS. Her C4 level at that point was 8 and over the last four years has eventually climbed back up to 12 (0.08, 10, 11, 12). Her C3 has been borderline (1.01, 0.86, 0.76, 0.81,0.76) for 4 years and she had one borderline C1 which is now normal. Has had extensive testing every year until last May for ANA etc. She was referred to Rheumatology because of swelling to her left knee, immunology because of swelling to face, lips etc and Gastro because of problems with her tummy. Rheumatology said everything was connected, although because the swelling did not conform to CFS there was lots of testing first. They diagnosed Idiopathic Angioedema because they don't know what causes the swellings/rash and think it is her immune system overworking. I was concerned because my mum had Rheumatoid Arthritis but tests for this are clear. Her tummy pains were also dismissed as IBS but after a year of vomiting and reflux another endoscopy was done and this showed Severe Chronic Gastritis. There have been a few steps forward but unfortunately because she is unwell so often each infection/illnesses causes a relapse which means we are no further forward. Any advice would be appreciated.

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Dr Caroline Grayson
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by Dr Caroline Grayson on Thu Aug 15, 2013 11:20 pm

Re: CFS/ME and Auto Immune

This is a complex presentation. It sounds like she has the right people overseeing her care and without having all the specific details I don't think I have any specific advice to add. I think it is important that she remains under the review of the rheumatology team as there are obviously some unusual features in her symptoms.
Caroline Grayson
Dr Caroline Grayson
Consultant Paediatrician

Catrina26
Posts: 8
Joined: Wed Aug 14, 2013 11:53 am

by Catrina26 on Thu Aug 15, 2013 11:34 pm

Re: CFS/ME and Auto Immune

Unfortunately this is what we have been told previously. That she is "complex" in her conditions. For the first 2 years of her illness we were told various things it "may" be i.e. CFS, Lupus, Arthritis, Post Viral, Glandular Fever. Unfortunately never having a clear specific blood test showing one thing hasn't helped. Neither is having an unhelpful Diabetic Consultant whose only advice was "it is just a label, chuck it in a bucket, you've got the tools get on with it"!!!!

I have also been interested to read the post of POTS and would like to know how it is diagnosed. My daughter has also over the last four years had palpitations, dizziness, headaches, chest pain. She did have one episode in hospital of a heart rate of 226! which frightened the nurse to death. She has had an ecg and wore a heart monitor for a few weeks which showed one episode of increased heart rate but this was of normal rhythm and we were told it was probably connected to her CFS. We have been back at GP recently because of dizziness and was told it was probably an inner ear imbalance. She only ever has her blood pressure taken sitting down. I would be interested to find out whether this should be done standing and sitting down.

We have been told they are keeping a close eye on her but my worry is what will happen when she is referred to an adult hospital (in Scotland you are just referred to the Homopathic Hospital with CFS/ME as no specialist clinics here.

She wears an insulin pump which has helped hugely with her diabetes and CFS but when unwell it impacts on her diabetes. Her gastritis caused huge problems with her eating and therefore her diabetes. Her gastro consultant has mentioned "stress" a few times re this but her Rheum consultant has said she is not stressed and tummy problems go hand in hand with CFS. I feel that we receive a lot of different info from different consultants which doesn't help. (PS She has had psychology involvement to help her come to terms with illness but they discharged her saying she is incredibly positive and doesn't get stressed about her illness at all).

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Dr Caroline Grayson
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by Dr Caroline Grayson on Fri Aug 16, 2013 10:47 pm

Re: CFS/ME and Auto Immune

I am glad to hear that your daughter has managed to stay positive despite having to cope with so much.
You mention POTS, to make a formal diagnosis there needs to be a change between the lying and standing heart rate of more than 30 beats per minute and or a standing heart rate of greater than 120. The general advice is to increase fluid and salt intake.
Dizzyness is not an uncommon symptom in CFS/ME and I do check on lying and standing Blood pressure and if low give advice about increasing fluid intake.
I am unsure where you live in Scotland but I was informed that there was someone new in post in Edinburgh who was taking a lead for CFS/ME in children and young people
Caroline Grayson
Dr Caroline Grayson
Consultant Paediatrician

Catrina26
Posts: 8
Joined: Wed Aug 14, 2013 11:53 am

by Catrina26 on Fri Aug 16, 2013 11:24 pm

Re: CFS/ME and Auto Immune

Thank you for your reply Dr Grayson. We live in Glasgow and have been under Yorkhill Hospital for the last four years. Her Rheumatologist does have an interest in CFS/ME and we have been lucky to be under a wonderful consultant who has helped as best she can, but as she has admitted specialist help and services are severely lacking in Scotland, especially with children.

We had an appointment with the nurse today to have her blood pressure checked due to being on the pill for severe heavy periods which were causing horrendous relapses in her cfs. I asked her to check her blood pressure standing as well as sitting and it was the same level both ways. Her blood pressure has been low on other occasions but helpful to know today it was the same standing and sitting.

It has been a long struggle the last four years with diagnosis and a huge struggle with school believing what cfs/me is. We had to take out a co-ordinated support plan and have both Rheumatologist and head Psychologist attend meetings to make school understand how fluctuating an illness this can be and to give my daughter the help required. With my daughter it is hour by hour, never mind day by day and planning ahead is unthinkable. We take each day as it comes. I am proud to say she recently sat two Intermediate 1 exams and gained an A in her maths and a B in her English even although she has missed almost 3 years of school and is still only able to attend between 1 and 2 periods a day with constant relapse every two weeks. I do wish there was more understanding amongst the medical profession regarding cfs/me - on occasions one GP said "it was all in her head" and another consultant told her to get a dog and walk it and she would be cured!!!!! I appreciate all the fantastic help we have received but am saddened by the amount of prejudice we have also come across. I pray that one day there will be a treatment that will help as I have seen first hand the devastation this illness causes. I feel my daughter has missed out on vital teenage years and learning but hope that in time she will recover.

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