Jess's Story

Living with Fibromyalgia

Firstly I would like to thank my Parents & my big Brother, without you I know I wouldn't have made it this far. I love you all and hope I can give you all the love and support you give me.

This is my story.

For 9 years I have been bounced around the nhs whilst suffering with constant pain in every single joint. My fingers, hands, wrists, elbows, shoulders, lower back, hips, knees, ankles and feet constantly ache, feel very painful and stiff. Finally in 2014 I was given a diagnosis of Fibromyalgia and finally I had hope it can get better.

All through my childhood I suffered with headaches and what the doctors called growing pains. They now tell me all of this could be related to my problems now and although I was a very active child it did mean I missed a lot of time from school. It wasn't until I got to high school when the migraines started and then the cluster headaches. I tried many different migraine treatments but the medication makes you drowsey and all I could do was sit in a dark room and try to sleep. I could get 2 or 3 migraines a month, I'd be ok one day then bad the next and sometimes these could last for 3 days.

This is when the comments started 'why are you always off?' 'You always say you have a headache but you're just making it up' 'you're lazy and a liar'. This really got to me and just made it worse and unfortunately it didn't stop at school.

I managed to get the grades I needed to go to college and do a BTEC in Electronic Engineering. I didn't enjoy being in a classroom studying, I preffered hands on learning and liked the idea of maybe working in robotics. During my years at college I continued seeing my GP as migraine tablets weren't helping and so he put me on amitriptyline and suggested I try a contraceptive implant. Since then I have used an implannon contraceptive implant and still use amitriptyline (although now a higher dose) this greatly reduced the amount of headaches I was getting but still was never a cure.

All through college my tutor of all people continued with the comments I had from my peers at high school. 'You're just lazy', 'you'll never make it to university and even if you did you'd drop out in the first few months because you're too lazy to do that much work' 'you're going to fail this course'. This really made me start thinking that maybe I was the problem, maybe there wasn't anything wrong and perhaps it was just because I was being lazy. It got to the point I'd come home from college most days crying and insisting I didn't want to go back. Luckily my parents pushed me, where this tutor told me I'd fail her course she was wrong, thanks to the support from my parents and a couple of other teachers who saw potential in me I passed my BTEC with 3 Merrits.

The experience of college put me off university and working in electronics but I did enjoy the class I had with a different teacher taking PCs apart and learning how they worked. This is when I decided to do an apprenticeship in IT. Not soon after I turned 17 and was working through my apprenticeships was when my problems got far worse. I got sent home after all of a sudden my joints swelled up and I was so stiff and in so much pain I could barely move. My parents rushed my in to the GP where the nurse practitioner said it looked like i was having some kind of allergic reaction so gave me some antihistamines and sent me home.

The next day I was feeling worse and went in to see the doctor, he wasn't sure what was going on but as antihistamines weren't working he gave me some strong anti-inflammatories and signed me off work to rest for a week. This went on for a while and and I wasn't getting any better and struggling to walk some days and needed my parents to drive me to and from work so I didnt keep taking time off. My doctor said I should go see a Rheumatologist but on the NHS the waiting list was several months. My parents said they would take me privately as that was far too long to wait for someone who was in that much pain and barely able to do anything.

The rheumatologist took one look at me and said it appeared I had at some point had a virus that triggered my immune system to over react attacking my joints causing viral arthritis. He gave me a shot of steroids to bring the swelling down and hoped if I continued on the right anti-inflammatories it should go away. He put me on his nhs rotation and I continued to see him on and off for a couple of years.

For 18months I struggled on, some days I could cope with the pain and others I felt so stiff and in so much pain I didnt want to move from my bed. I felt like my joints were swollen but everytime I saw the specialist he said there was no swelling. I had bone scans, xrays and many, many blood tests but they never found any sign of actual swelling or arthritic reaction.

All through this I was taking Tramadol, full dose, everyday as well as anti-inflammatories and they increased my Amitriptyline dosage.

Eventually the rheumatologist said they can't help, I just have to take pain killers and get on. They told me I wasn't getting enough exercise but how can I exercise when most days I can't walk to shop just around the corner? They sent me to physiotherapy so I paid 2 separate physios who both said they can't help as theres no physical problem and they would make me worse so no idea why the doctor would send me to them. My GP sent me to 2 other rheumatologists over the next few years and tried many different medications. I suffered on and off, I could go for a few months with minimal pain then suddenly it would turn and I'd go back to not wanting to move from my bed.

This is when I started to give up trying. My managers didnt understand why I struggled and so I changed jobs a fair few times as I couldnt cope with the negativity I recieved when I was having bad days. None of these jobs ever offered me occupational health assistance and I grew more and more isolated.

The last of the rheumatologists diagnosed mild hypermobility in my spine, elbows and legs, however it was minimal and didn't account for my hands and wrists which were, along with my knees the worst area affected. She eventually told me to just get on with it as the only explanation was it was in my head. She recommended the pain clinic but I turned it down as I just wanted to give up. I carried on the same way, a few months I would be OK then I'd have a bad spell that would last a month or 2 but I pushed through the best I could believing I had no other choice.

Around 4 years ago my Dad was taken seriously ill with full kidney failure. This took a big toll on the family, he spent months in hospital then for a couple years was in and out for dialysis and check ups. I stopped talking about my joint pain altogether at this point, I wouldn't allow anyone to see I was struggling at all as I wanted my Dad to have all the support and not add to the stress of my Mum. Thankfully my Dads kidneys started to function again, not much but enough so they could stop his dialysis and he was finally getting better.

I was staring down redundancy at this point with my job, I had been suffering in pain in silence for 2 years, I had someone else looking after my horse and I was spending most of my time alone, avoiding people. As soon as they said my Dad was OK I walked in to my GP and I broke down, all he said was 'I don't know how you've lasted 2 years, I'm supprised you've held yorself up so long'. I was in a very dark place by this time, I felt like I hit the bottom and there was no way out. He started me on antidepressants and started doing some research in new methods that were being researched for chronic pain sufferers.

I was on antidepressants for around 6months, I was still on Amitriptyline and had just started on Codydramol for pain. My GP was most concerned with my lack of sleep, We looked at the cycles of my bad pain periods and sleep was definitely key. He started me on Tamazapam as a temporary solution to get a sleep cycle in place. We did this for a year, everytime I started to struggle and my sleep was being affected I'd go back to sleeping tablets to break the spiral. This helped, it never took away the pain completely but it was enough for me to cope with whilst using pain killers. I started going to a yoga class, I told my instructor all about my issues and so she modified a lot of the classes and gave me special exercises to do at home to help rebuild my muscles that hadn't been used for years.

That brings us to 2014, after 9 months of pushing myself in yoga class and starting to get better and feeling fit BANG I had the flu at the beginning of the year and everything spiraled from there and I went back to square one. I couldn't take it, I was so angry and upset that I had struggled through months of pain to get fit and I couldn't get out of bed. I saw my GP, he signed me off for 2 weeks and gave me some homework to do on Fibromyalgia, he had recently read some new research on this condition and although not all my symptoms match up he was sure if he could get that diagnosis he could try the medication suggested and it would help.

He sent me to a neurologist this time, he wanted to confirm once and for all that there was no neurological disorder and get them to sign off on Fibromyalgia. The neurologist upped my Amitriptyline and started me on dihydrocodein for the pain to get me back to work. It took 6months of scans and tests but the neurologist gave me the all clear and wrote a letter saying 'I agree with a diagnosis of Fibromyalgia'. Finally!! I have a diagnosis!! The relief on me and parents, 9 years of being bounced from pilar to post never knowing what was wrong, being told to give up trying to find out what was wrong..

At age 26 I finally have a diagnosis, theres no cure but atleast I know and to all those people who questioned me over the years all I can say now is.. I'm not lazy, I'm not a liar, I'm a person who has endured, I never needed you're sympathy.. Only wanted an acknowledgement of my pain existing.

my current employer has since provided me occupational health, there has been no negativity and they have ensured I have everything I need to keep healthy at work.

I can happily say since December 2014 after 4months of waiting for my new medication to start taking effect, I had 5 days in a row of no joint pain. I was in Lincoln, I walked up that steep hilld the city centre sits on, my muscles were very sore for it but I had no joint pain. I thought I was going to cry, I enjoyed the muscle pain because I knew this was the beginning. I even went ice skating just after christmas in Nottingham! I saw my GP after this and I gave him the biggest smile and when I told him about those 5 days he was actually speachless. He told me I had made his year and sent me on my way.

I may never be cured, the mornings are still tough and it can take a few hours to relieve the stiffness, I will always have those days where it will be bad and I can't do much and maybe even this medication will stop working some day but for now I can say I truly have hope again.

My current medication is:

  • Venlofaxine (Vensir 24hour prolonged release version)
  • Dihydrocodein (2 x 30mg as of when needed)
  • Amitriptyline (25mg, to be gradually reduced once we ensure the venlofaxine has taken full effect)
  • Diazepam (only to be taken if it's a very bad day and I can't sleep)

It is also vital to eat healthily, I gained a few stone during my first few years of joint pain and it is a struggle to lose that weight but if you can it will help.

My goals for 2015 are to be able to walk my dogs, get my muscles built back up so I can go on a hike and maybe, just maybe be able to go horse riding again as I havent been able to for a few years and I miss spending time with my horse!

Lastly, to anyone who reads this please do not give up, you are not alone, there are thousands more stories like mine and together we can listen and help each other.

You don't have to suffer alone.

Jess Hill

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