CFS/Fibromyalgia/HMS

[LaurenBurton]

I've just been diagnosed with Chronic Fatigue Syndrome and Fibromyalgia, along with my previously diagnosed Hypermobilty Syndrome. I worked Subway for over a year and then a factory and it's so difficult. I'm tired all of the time. I can only take my painkillers when the management says I can, I forget things, I've burned myself really badly, at both jobs. I struggle to get out of bed and I've fallen asleep standing up, in the middle of jobs, on my breaks. When I walk, I feel like my ankles and legs are going to fall off. I've been out of work for 3 months. My 3 month trial period ended at the factory and since I had a week off due to a car accident (which I think was caused by my tiredness and lack of attention span), they let me go. I also have depression and anxiety. I know that people have it worse than me but that doesn't help the battles I have with myself on a daily basis.

[JanWellcome]

Hi Lauren, sorry your feeling rotten, not sure 🤔 how old you are, while your trying to get on top of things are you claiming ESA, one of the things suggested to me was trying to get good sleep 😴, easier said than done, amatriptalain ( sorry spelt wrong) can help, this will also help with depression, there are a number of things you can do, to cleanse sleep, electronic devises before bed are bad if you use them see if they have bed/night mode, breathing exercises, exercises that are genital ones will all help. You might be sleeping but if you are not getting restorative sleep it will be exacerbating your symptoms and making it difficult to manage. Is a different type of job a possibility for you, I.e one where you can sit and not be on your feet. Hope you get on top of things soon. Jx

[Tillyray]

Hi Lauren. I am sorry to hear you're having a difficult time. I know that it must be very hard, impossible in fact for you to work with having such pain and fatigue.Then being forced to worry about the implications of taking time off only adds to anxiety/ depression. If you haven't already done, I would suggest that you make a claim for out of work benefits such as ESA and PIP. The citizens advice or a charity advocate in your area will help you with your application. Being in receipt of some financial assistance will releive the pressure of this worry at least. Having a diagnosis will enable you to apply for such benefits.Keep all your Doctors, consultants letters to use as evidence in your claims.

You say you have a previous diagnosis of Hypermobility syndrome. Who diagnosed this may I ask?.. My understanding from my own experiences, is that joint Hypermobility is sometimes recognised and diagnosed by GP's and general rheumatologists, but the implications of this are not understood by such medical professionals. A person is then left, where they can struggle with body system problems, pain and chronic fatigue for years with no understanding and without appropriate treatment. Regular visits to the GP and referrals to consultants do not pick up on the connection that Hypermobility problems can be a sign of an underlying condition. These can be Hypermobility spectrum disorder or an Ehlers Danlos Syndrome, and need to be correctly diagnosed... Chronic fatigue can be part of many illness', but it is also present with these conditions, and I know just how debilitating it is!..

WIth hEDS, chronic fatigue is one of the features. Jason Parry, physio at the Hypermobility unit wrights that, 'hEDS and cfs pretty much go hand in hand' he says 'many tell me they have an official diagnosis of chronic fatigue syndrome. To me they are not mutually exclusive. When considering a diagnosis of hEDS, I'm not convinced whether there is in fact much difference between a diagnosis of cfs and this simply featuring as a prevalent symptom of the condition'.

I was diagnosed with fibromyalgia 7+ years ago. But I was told by my EDS specialist when getting my diagnosis of hEDS, that for me, fibromyalgia was 'a collection of symptoms'..

I would advise you to see a specialist in Hypermobility, EDS. There is an NHS specialist rheumatologist, Dr Pauline Ho at Manchester Royal Infirmary.You can ask your GP to refer you under the choose and book system.. Or The private Hypermobility Unit in London where I can highly recommend. Dr Alan Hakim. If you contact the HMSA - hypermobility syndromes association- or EDSuk, they will have a list of consultants.

If you need any information or if I can help with anything else, let me know.. Good luck and best wishes🙂 xx