9Fibromyalgia and racing a motocross bike

[Girl154]

Good morning everyone,

I have a rather odd question. So, before my accident I used to race motocross bikes at a semi-professional level and then since then (2016) I retired due to my chronic pain, I was then diagnosed with Fibromyalgia about a year ago.

I have been trying for four years to work back up to getting back out on the tracks and I eventually have with the help of my physiotherapist, the pain clinic and my medication. It still painful and with good old Fibromyalgia day to day can be different and it's the same on riding days.

The problem I currently have is I'm having an on-going issue with my work management basically saying because I've returned to motocross racing that I don't have and never had Fibromyalgia. Even though they have had countless medical notes stating otherwise. If I'm well enough to race that I should always be well enough to do the stuff they're requesting. I've tried numerous times to explain that's not really how the condition works and that my body hates me and decides itself when to amp up the pain but they are basically pointing the finger saying I'm lying. Due to this they are threatening me with loosing my job due to lying to the company.

They've got into my head a little, maybe the pain I feel isn't Fibromyalgia if I can push through the pain to ride? There are some days where it's a complete I'm not going out on my bike because I physically can't. Where even putting a t-shirt on hurts when it touches my skin.

I'm really deflated and I just feel as if I'm a fraud even though i keep telling myself im not, this pain is real why wont anyone believe me. I feel like I don't want to go back into work again, don't want to face them again. I wish the pain I feel would show up as bruises on my skin otherwise I don't think they ever will believe me 😔. I'm really at a loss at this point. I'm so unbelievably low, I just don't know how my life can get any worse.

My question is - are the management at my work allowed to do that? Also, can people with Fibromyalgia do sports as a hobby or have I been given the wrong diagnosis?

[Hazel_Angelstar Administrator FMA UK Staff]

Please get some professional guidance/advice from someone like a union or ACAS. Being able to manage a hobby for an hour or two is not the same as being able to work. Also, unless your employer is medically qualified they cannot say that your fibromyalgia diagnosis is incorrect

[Dinkie]

Not an odd question at all.

Firstly, you are protected under The Equality Act 2010 so your employer needs to be very careful as tribunals don't take too kindly to any company flouting the rules and recommendations. You can request that your company carry out an occupational health assessment. My employer did it and although I was very anti, it was the best thing that could have happened to me and enabled me to stay with the company for many many years. The report, which you can see prior to it being sent to your employer and you can ask for corrections to be made if there are errors, will recommend reasonable adjustments to enable you to stay employed. Now here's the tricky bit, the employers are able to say no but only if it would have a detrimental effect on the company. To be honest it's a brave or stupid company that will not put the adjustments in place. My late husband's company flouted the rules and had to pay a considerable amount in compensation but that's another story.

You could also ask FMAUK (see bottom of page) to send employers guide to fibromyalgia out to them. I believe they also do one for GPs too, if your GP isn't too au fait with fibro.

Now the problem with fibro is it does tend to fluctuate with some folk. Some get pain 24/7 and some do not. Some have a high pain threshold and some do not. Some can take prescription meds and some can't. Fibro is very personal. What is common is we have to learn the art of pacing. Just because we feel a little less pain one day doesn't mean we have to go like a bull in a china shop and do everything we have been unable to do in the previous few days. If you do, then the fibro sprite on your shoulder will ask for payback and that could mean a nasty flare up where you will be good for nothing. For me, and it's personal to me, if I wish to go somewhere (I like to steward at dog shows etc) then for the two days prior to the event I rest up as much as possible (taking leave from work), do the event, and then rest for two days afterwards. That way I just about get some life, because let's face it we need to live not just exist.

For me diet helps, no processed foods at all and no refined sugars. Others will say diet makes no difference but that's the problem with fibro - it's different for all of us. Hot water bottles, heat bags, weighted blankets, tens machines, biofreeze gel, alternative treatments like hydrotherapy, chiropractor, hypnotherapy, acupuncture, tai chi, yoga, gentle stretching all will work with some people. Some take opiods, anti-depressants or a combination of the two, and find relief some don't. It's very much a trial and error thing. The only advice my consultant gave me was PMA (positive mental attitude) hard when we are in pain but worth trying. Pain clinics, fibro clinics, CBT have all been helpful for some.

Any questions, please ask, somebody will know the answer or at least have some suggestions.

[SweepSooty]

Hi Girl154, I have had fibromyalgia for years and in constant pain, I also have inflammatory arthritis, epilepsy and immune deficiency. But I still enjoy enjoy getting out and about, I do aqua aerobics twice a week and try to walk short distances. Just because someone has a disability doesn't mean they have to give up on life and the things they enjoy, otherwise you might as well just waste away. Sometimes being in pain all the time makes you more determined to push though it, and pain isn't always visible to those around you. You are doing well to get back to the sport you clearly love, don't let others take that away from you.

[Onceabiker]

Firstly I would say get a letter from your Doctor, even if you have to pay for them to do it. Secondly try Citizen's Advice and see if they can point you towards an authority, have you a union at work? Even if you contact General Workers Union they will offer advice even if you are not a member. Lastly get advice from a Lawyer.

How long have you worked for this employer? Less than two years you have less rights. Another thing to consider is how big is the company you work for? If small they might just not be able to afford not having you at work and be in danger of going out of business, a bigger company can take it on the chin and should look after you. Do they have a Human Resorces department? Talk to them about it all, your Doctor may even make a phone call to the HR manager if asked.

I raced cars for 18 years and circuit raced motorbikes for six winning two championships all with Fybromyalgia. I rode mountain bikes to keep me fit. The adrenaline and endorphins ease the pain of the condition and as my health declined, I am nearly 65 now, I got an eMTB to keep me going, allow me to do other stuff and very importantly help with my mental health.

Find support.

X

[Yassytina FMA UK Volunteer]

Glad too see you have had some helpful advice and replies from members, one day we can do more the next it’s a no go day, that’s Fibromyalgia never a level playing field is it. 😟let us know how you get on , sounds great fun and glad you still try and do your hobbies when you can xx

[Camille1]

I agree with those who have suggested advice from a union and occupational heath.With regard to symptoms and our hobbies/exercise routines. I had to quit the gym years ago when I was first diagnosed as everything I did was so painful (not the usual muscle aches that usually come with workouts).

I exercise as much as I can, but it's really not that much now. However, I did climb the highest mountain in England last October! I didn't think I'd make it and it took about 4 days to recover, but I did it! I told my work colleagues (only 1 plus my line manager know about my fibromyalgia) and I feel they look at me and don't understand how I could do that, yet struggle with less taxing day-to-day things. This the thing with this condition, it fluctuates. Look up the spoon theory and try and explain it to them that way.

[Sarahvit]

Hi Girl, I would say that they can’t or shouldn’t. I am in the US so can’t speak for the UK but I saw a while back someone said something along the lines of discrimination against people with disabilities act or something similar to that. Back in 94 when I was diagnosed with fibromyalgia and chronic fatigue syndrome my main place of employment said I could take 6wks of medical leave but had to have a doctor sign a note saying I was was cured. If I returned back to work with the same problems that I would be let go. So basically I had the choice to resign or get fired. It was during that 6wks when I was diagnosed with fibromyalgia and chronic fatigue syndrome. My doctor laughed at works requiring a note saying I was cured. He said there isn’t a cure this is a chronic condition. I am not sure when the laws changed regarding workers with disabilities act? In the US some states have what they call “right to work states” I call it “right to fire states” because employers can fire an employee for things like “they don’t like the color of shirt” the employee is wearing. I questioned the state labor law representative on this which basically states “no one in those states have any job security”. As far as the question of having well documentation on having been diagnosed with fibromyalgia and now because you have or want to return to motocross bicycle racing that you don’t nor never had fibromyalgia. I really can’t say that this is true. I have been trying just about every and anything that made medical sense to cure the fibromyalgia and chronic fatigue syndrome over that last 30yrs. I have not been nor know of anyone who had been “cured” of this awful and misunderstood illness. I have had other diagnoses that I was diagnosed with such as gastroenteritis and ulcerative colitis which was later dropped or want into “deep remission”. I know fibromyalgia effects everyone differently but it all does go into major flares when we over do it. So my question would be “after doing the sports activity do you experience an exhibition of symptoms?” That is one of the hallmarks of fibromyalgia that has never changed over the decades.