Getting a diagnosis / Working Life Adjustments / Advice

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Getting a diagnosis / Working Life Adjustments / Advice

Postby blueredgreenyellow » Sun Feb 14, 2016 10:07 pm


I was hoping you could help me with a few questions and queries I have.

I have been suffering with a mystery illness for around 6/7 years now. It seemed to come after I got the condition reactive arthritis. It has been a long and hard period of time which has strained; relationships, working life, university and my own emotions. I still to this day have not gotten a definitive diagnosis but after years of persistence I feel I am getting closer to a diagnosis.

I have had a plethora of blood tests, heart scans and MRIs and they have all come back negative. Which is obviously a good thing but it gets me no closer to a diagnosis for this the debilitating mystery illness that nobody can see or understand.

I have had to go to my doctors around 10-15 times over this period of time and whilst they have given me blood tests and an MRI largely they have been pretty useless. I have had numerous different doctors, some junior doctors, some that feel anything that isn't visible is depression and one that has outright laughed in my face. I have found it incredibly difficult to convey the gravity of the wide range of symptoms I am feeling. To them it is just a list, but to me it is something I have to live with every minute of the day.

I have been to the doctors a large number of times but before this I was not the kind of person that went to the doctors very much. I sometimes try to go for long period of time without going to the doctors and just try to manage my symptoms but this is difficult because it is hard to manage your symptoms when you aren't entirely sure what you have.

Sometimes I feel like I am going mad because the symptoms really get me down but I don't have a diagnosis and it is such an isolating and lonely condition. I want to move on with my life and adjust accordingly but I am hung up on this lack of diagnosis and therefore the appropriate lifestyle, treatment and support.

It's hard to get some doctors to help because I feel like I am on a conveyor belt in which the doctor is trying to find a quick template answer that fits all. Rationed a very small window of time so they can move on to the next patient. Time and time again I build up my excitement because I feel like this time is the time I could finally get the answers and then ended up walking away feeling deflated and disillusioned back the wilderness to get on with my symptoms, no closer to the answers.

I get the impression that some doctors think they have done numerous blood tests and an MRI and so therefore there is nothing wrong with me and it is all in my head or I have some kind of mental health condition like anxiety or depression. Just because they haven't found it yet, doesn't mean to say there is nothing wrong and that nothing can be found. It just means they have eliminated so many conditions and as of yet haven't looked in the right places for the right things. Or taken some time to join the dots.

If I say my symptoms they tend to focus on the first symptom I say, if I write them I get the impression they think I am a hypochondriac.

I went to the doctors last week again and got a junior doctor who was quite handwork. After explaining the situation and the symptoms I got a surprising and unhelpful response of 'so what you here for today? and what do you want me to do?'. An absolute ridiculous question for a doctor to ask. Anyway, we finally got to the point in which he wants to do further all round blood tests and has referred me to the rheumatology department and believes there is a high probability it could be a condition such as Fibromyalgia, Chronic Fatigue, ME or Post Viral Fatigue etc.

I obviously don't want any of these conditions but I have resigned myself to the fact that this is going to be a life long condition I am going to have to deal with. Getting the diagnosis of one of these conditions would be a strange relief. That puts a name to what I have been feeling all of these years and I can adjust my life accordingly.

Here a the main symptoms I suffer with;

- Brain Fog
- Lack of mental clarity
- Stuttering, stammering, slight slurring, difficulty find the right word
- Memory Problems
- Fatigue
- Exhaustion
- Frequent need to urinate
- Lack of quality sleep
- Muscles ache
- Muscle weakness
- Headaches
- Bloating
- Sensitivity to hot places (rooms/cars etc)
- Alcohol makes symptoms worse
- Feel like I am dragging myself through the day
- Feel easily mentally overwhelmed
- Flushing
- Frequent colds /flu
. Heavy Muscles
- Mild balance issues
- Condition permanent but fluctuates in intensity
- Hyper salivation

Additional Note - 26 year old Male.from the UK - Have a great support network of family, friends and girlfriend.

I have managed my symptoms over the years due to a number of factors. I have been at college, university, been unemployed and had part time jobs - this has allowed me to have a reduced workload. My lifestyle has been on my terms and therefore I have been able to live the lifestyle I have needed which has helped me partially manage my symptoms.

I have now finally gotten my first 'real job' a career. Something I actually enjoy doing and something I find interesting. I work in an office with just my manager undertaking graphic design, marketing and general office work. We are a subsidiary of the main company which is based in London but we are based up North.

Getting this job is great news. It gives me great pride, job satisfaction and the finances to start a life with my girlfriend. However. Already I am noticing my condition is starting to become exacerbated and this causes me concern and worry. I don't want this condition to ruin my life or my career. Especially in my early days with this company.

Because I don't have a definitive diagnosis I don't feel like I can be upfront with my employers about my condition. Conditions like these can be poorly received anyway and so putting something like this forward without a diagnosis is very difficult. And so I feel like I am waiting it out until I go to the hospital referral which may not be for several months yet and will suffer in silence in the mean time.

I have only just met all of these new people. Fortunately I feel I have good relationship with my manager and the MDs in London already, they seem to be pretty understanding people. However. I feel embarrassed to admit this to people - partially because it makes me feel weak, partially because of my lack of diagnosis and partially because of the taboo that surrounds these conditions.

They have no idea I am suffering from this at all. I am just powering on and getting through. I have been getting a lot of praise and have already gotten a good reputation for my workload and quality of work but they have no idea what it takes for me to do this.

1. Feel easily overwhelmed and brain fog like in meetings or when given large amounts of new information. (Brain feels like it switches off and I aren't taking in much information and disconnected.Hot flush)

2. Full time hours. Long days. Early mornings. Makes me feel like my condition is ruling my life. Like I use the little energy I do have to get through the day and then by the end of the day I feel like a zombie. Tired, spaced out, zonked. This can be on a Monday after having a weekend off. I feel incapable of doing much after work and like I need to get to bed to have enough to give the next day. (Even though sleeping doesn't help most times. Very difficult to get up in the morning.

Therefore. It feels hard to strike a work/ life balance. Like I am getting up > going to work > going to bed. I find it very difficult to do anything after work.

3. Rooms that I can't control the temperature can make symptoms worse.

4. Frequently going to the toilet impacts my productivity.

5. I don't want to feel suffocated by my job because of my illness. Like I am just being pushed a long by bulldozer, not being able to recharge my limited capacity batteries. I don't want to leave my job but financially couldn't leave my job even if I wanted to.

6. I am a dedicated and hardworking person who is contributing a lot to my company, There is pretty much no benefit from me actually working at work. The work could largely be done absolutely anywhere. In an ideal world it would extremely beneficial to be given the flexibility to work from home a day or two a week but I wouldn't dream of asking for this special treatment.

Again. Sorry for the long message and I really appreciate you taking the time to read it and answer. It was pretty difficult to explain the situation to you without going into some detail. I know I haven't got a diagnosis of these conditions and I hope I haven't offered anyone that does have that diagnosis. You can maybe help change my mindset about certain issues and mentalities I have.

1. How did you go about getting your diagnosis? How long did it take? What roadblocks did you face on the way?
2. What is your advice to me in terms of my job? What do other people do?
3. What are peoples rights in the work place? are people entitled to flexible work conditions?
4. General advice and recommendation? Dealing and coping?

Thank you so much.
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Re: Getting a diagnosis / Working Life Adjustments / Advice

Postby Butterfly8588 » Mon Feb 15, 2016 3:48 am

Hi there,

I'm sorry to hear about your struggles, it's truly horrible to know there's something wrong with you and to not have a diagnosis. I remember how hard I fought for mine, it was important to me to be able to explain to people close to me what was going on. Even though I was lucky enough to have family who never doubted me, it just felt like I could deal with it better knowing what it was and what to expect.

It took me about 3 years to get diagnosed. For the first year or so my drs just drugged me up on pain killers but I pushed harder because I was in my very early 20's and I didn't want that to be the rest of my life. Fast forward 2 MRI scans, countless appointments/blood tests and a narrow escape from brain surgery and we finally arrived at fibro. I'd never heard of it but you tend to learn quickly! I'm afraid I can't advise you on working, I've been a carer to my boyfriend since I was 16 so I wouldn't know. I'm sure other people will be able to help you though.

I don't think there's any 'one size fits all' way of coping with having fibro, it really is different for every person because symptoms vary so much. For me, I try to be as kind to myself as I can, I've had fibro nearly 7 years so I have a better understanding of what I can and can't do. I don't sleep very well so am quite often tired, that's never gone away but I think you somehow manage to function at that level after a while. I'm not going to lie though, I still struggle quite a lot even now in far to many ways to list.

Anyway I've rabbited on long enough, I really hope you get a diagnosis soon, whatever that may be, and you can learn to live as best as you can.

Good luck and gentle hugs xx
I'm the ghost of a girl that I want to be most, I'm the shell of a girl that I used to know well.
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Re: Getting a diagnosis / Working Life Adjustments / Advice

Postby blueredgreenyellow » Mon Feb 15, 2016 9:58 am

Thanks a lot for your quick response it was helpful. Didn't realise how active this forum was with 1500+ views over night.
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Re: Getting a diagnosis / Working Life Adjustments / Advice

Postby migrembe » Mon Feb 15, 2016 11:37 am

Sorry I am unable to read all you email, my brain just can't compute. However, I do get your sense of frustration from lack of diagnosis, it took me 11 years, but I wouldn't have given up work without having a major fall downstairs which damaged multiple joints down one side of my body, but nothing to do with the Fibromyalgia. Since then I have been diagnosed with Chronic Fatigue Syndrome or ME, chronic depression and I also have left sided hemiplegic migraines.

However you don't need to change your life at all just because you get a diagnosis. You might want too, but you don't have too. I know people who live a relatively normal life with the same diagnosis and they work every day and look after their family as normal. A diagnosis is not what should make you change your life, but the fact that you are unable to function because of your symptoms and you have had those for many years already. Stop thinking you have to change anything, just because of the diagnosis, although it may help you to settle your mind.

I don't know if you are on any medication, but medication can cause many bizarre symptoms.

Beverley :hugs:
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Re: Getting a diagnosis / Working Life Adjustments / Advice

Postby thesse » Mon Feb 15, 2016 12:27 pm

I know it seems crazy but when they say ' What do you want me to do' say something like -

My symptoms point to a systemic issue, I believe it may be musculo-skeletal, could be autoimmune - please refer me to a rhumatologist, if you feel that a rhumatologist is not needed, please can you refer me to a therapeutic service such as the Chronic Fatigue Service in the area or a Pain Clinic' Then say ' Please can we review my medication and ensure I have the correct painkillers and the right drugs that I need for sleep / energy'.


Tell them what you want, they like it, but be realistic and have a bit of research in the bag.

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