Wendy

After a series of viral infections from September 2010, I was diagnosed with ME/CFS by my GP in Dec 2010. I was struggling to get out of bed, I had little to no energy, severely debilitating fatigue (feeling persistently zombiefied), flu-like symptoms (extensive muscle and joint pain, achey body and constantly sleeping), recurrent sore throats, raised glands in neck, headaches, poor cognitive function (struggled to concentrate for more than 10 minutes at a time, memory loss, difficulties processing information) and severely debilitating fatigue (not refreshed by sleep). I had all the symptoms of glandular fever but results came back negative in October 2010. The symptoms magnified further leaving me bedridden. I had further tests throughout November but when these were all negative I was diagnosed with post viral fatigue and then ME/CFS by my GP in Dec 2010.

I was then referred to the ME/CFS Service who confirmed the diagnosis in August 2011. I never wanted to be defined by an illness and didn’t want this to end a career that I loved and was passionate about. I was determined to be one of only 3% that returned to full health. With ME/CFS Service support and weekly holistic treatments (from the onset of symptoms) I did everything possible to improve my health. It was necessary for me work part-time and relinquish responsibilities but over the next 3 years there were improvements and I had landmark achievements.

By the summer of 2014 I was completing 7 mile walks which was absolutely amazing for someone that was completely debilitated and couldn’t get of bed. I still had to ‘pace’ but I felt that my tough journey was coming to an end.

Sadly I experienced my first relapse in June 2015. My symptoms were different to before. I had all of the ME/CFS symptoms and was incredibly weak (probably not helped by a ferritin level of 15) but my skin and bones were incredibly painful (especially ribs) with the lightest of touch. Water from a running shower was painful on my skin. The muscle and joint pain was more extensive. I was then diagnosed with fibromyalgia in September 2015.

From the end of Dec 2015/beginning of Jan 2016 symptoms worsened further with muscle spasms in my chest and back, very painful and ‘burning’ ribs, breathing difficulties and chest pain. I was then diagnosed with costochondritis and intercostal myalgia (linked to the fibromyalgia). This is not only incredibly painful (I feel as though I’m permanently winded, hurts to move and breathe) but makes me ‘out of breath’ (without any exertion). Talking is incredibly painful, often difficult and increases breathlessness. This was in addition to the already severely debilitating ME/CFS symptoms. I still haven’t recovered from this relapse. I returned to being bed bound. I went back to where I started which was tough after getting close to full health after a very lengthy 3 years. After feeling that I was living and not existing for the first time from the summer of 2014 .. I then went back to the beginning all over again which was soul destroying. I have always done everything possible to try and improve my health. The self funded holistic treatments that I was benefiting from before (acupuncture, reiki, massage, reflexology) were no longer having a beneficial impact (in reducing severity of symptoms). I then self-funded hyperbaric oxygen treatment (HBO) from April 2016. I did this for just over 1 year until June 2017.

Despite all treatment interventions the severe limitations and difficulties that I had been experiencing didn’t improve. My energy levels are extremely low and often non-existent. I struggle to walk. The simplest of tasks are either impossible or extremely time consuming, painful and exhausting for me. Frequent rest breaks are needed during an ‘activity’ and extended rest after completing ‘activity’. Any ‘activity’ depletes energy, increases exhaustion, increases muscle/joint pain, achiness and breathlessness. Mindful of that, I have to break the ‘task’ down into very small steps. With poor cognitive function, I have to focus hard and the concentration needed increases fatigue. I have to be careful not to ‘overuse’ the limited energy that I have and over-exert myself as symptoms deteriorate further and I’m completely ‘wiped out’ afterwards and bed bound for the next day or two or for much longer. I experience anxiety and struggle with ‘not knowing’. With symptoms not improving over a year later (February 2017) and breathing, chest and rib pain significantly increasing and unable to complete the spirometry tests, my GP referred me to the Respiratory Medicine department at my local hospital concerned that it could be something more sinister. I was seen in June 2017. The Consultant was fantastic and explored the onset of my ME/CFS symptoms back in 2010. I had travelled extensively before getting sick in 2010 so he referred me to the Hospital for Tropical Diseases in the hope for a possible cure. I had already been tested for Lyme disease (Elisa test) which like all other tests was negative. Every test that was completed at the Hospital for Tropical Diseases came back negative. That was a massive blow. I can remember being bed bound for 3 weeks after that (from the physical and mental exertion despite having to use patient transport to get there).

I never knew that the implants that I had could be making me sick. I have had breast pain in my right breast shortly after the breast augmentation in April 2007. It has always felt a little tighter. This probably wasn’t helped by the fact that I was involved in a car accident, resulting in a fractured sternum, a month after surgery! Having breast augmentation was a massive step for me. It had to be done by someone who was considered and found to be the very best in his field. I chose Mr Erian at the Cambridge Private Hospital. I went from 32AA to 32C. I never felt feminine with a 32AA flat chest. Mr Erian’s philosophy was to ensure that the end result looked natural. They do and always have. Mr Erian did check (just a physical examination though) for any rupture after I fractured my sternum in May 2007 but said that everything was fine. Prior to being seen by the Respiratory Medicine department in June 2017 I tried to access my records thinking that this might be useful. I had my breast augmentation in April 2007 and I was never told what implants I had. I’ve kept every piece of paperwork but apart from ‘bilateral breast augmentation’ being recorded I don’t know anything else. I wrote a letter to Mr Erian at the end of April 2017 but never received a reply. I sent an email via his website and then had a conversation with his fellow colleague’s PA (May 2017) who explained that Mr Erian had retired and records only have to be kept for 6 years (which has now passed) but she would endeavour to do all that she could to find some answers for me. I chased this as frequently as I could but was told that contact would be made once there was something to share. In December 2017 after chasing again (my attempts had been sporadic because of my symptoms) I was told that nothing was found. My GP has the same information as me – absolutely nothing! With the fibromyalgia and costochondritis diagnosis, I’ve naturally attributed the symptoms that I have in the chest and rib area with that. I’ve never thought beyond that. I have kept an extensive log of symptoms since 2010 especially focusing on ‘new’ symptoms. Burning pain became more extensive (other than just chest, ribs, breast area) and is often in back (upper), spine and left leg from September 2016. I haven’t been able to wear a bra since December 2015. It magnifies the ‘tightness’ in my chest and I feel like I cannot breathe. Even wearing a vest often feels too tight.

My family frequently notice that I am cupping/holding my right breast and asked me if I was experiencing pain there. It’s made me conscious of how frequently I do that. It feels heavy and I suppose I feel like I need to support it. I do sometimes massage the acupressure points around the breast (as I’ve been shown to during holistic treatments) to try and ease the pain. The right breast has always felt different to the left but after Mr Erian completed a physical examination to check for a rupture in 2007, I’ve just assumed that everything must be OK and not think too much about it. I haven’t bothered my GP with any specific breast pain symptoms because I’ve just naturally linked it to the intercostal myalgia, fibromyalgia and costochondritis. I have never had an ultrasound or MRI scan of the breasts.

In 2009 after having a rash on my right breast for over a year with intermittent cracks around the nipple area and different creams being prescribed that didn’t clear it, I was referred to the Breast Clinic with suspected Paget’s. When they saw me and viewed the photographs that I had taken, they were happy that I didn’t have it. Now I wonder if that was linked to the implants.

My severely debilitating symptoms continue but I am extremely fortunate to have the love and support of the most amazing family and man in my life. That gets me through the toughest of days. I feel so blessed but would naturally love to finally live and not just exist. Having discovered the closed facebook UK Breast Implant Illness and Healing Support Group and reaching out to Abbie Eastwood, I truly believe that a beautiful new phase of my life is about to unfold.

I am now on the waiting list for explant on the NHS.

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