Hello everyone, I've recently been diagnosed with fibromyalgia, ME and pots syndrome I've always struggled a bit but in recent months symptoms have worsend headaches back pain really bad pain in hands and pins and needles that type of thing I work full time and would like to know if anyone can recommend things that can may help me to continue to work full time that won't completely wipe me out or cause further pain like aids that may help I already use a pain pen, on medication drive to work and take a little break every couple of hours in work my job is not physical really I work mainly office base but my biggest fear is getting so bad I would have to give up work I don't see this as an option I've worked to hard to be in the position I'm in to loose it all, has anyone had a similar experience or can offer advice thank you in advance, Sam 😊
Managing new conditions 😀: Hello... - Fibromyalgia Acti...
Managing new conditions 😀
Well hey there SamL7 well really hope this may help ya I take Amitriptyline which helps with nerve pain however the dose may have to be increased over the months as mine is starting to wear off. A magnesium spray may help with the pins and needles however I have had to come off this as my skin starting getting really flaky. However this may not be the case with the cream form, I haven't tried that though, take care 😃
Thank you for your reply I will give the cream a try 😊x
Welcome 🙂
Hi Sam, I am just finishing work but managed to work a busy, senior full time role for over 10 years from being diagnosed.
At times it was definitely tough, things that helped me were basic aids like wrist rests, comfortably shaped mouse and a good adjustable chair. Plus a second informal work area so that I could shift position. A personal fan and heater meant I could control the temperature of my office.
But most of it came down to my employer’s understanding rather than practical aids. The opportunity to work from home as needed. Flexible working hours, for example a late start if I was feeling groggy in the morning or the ability to disappear off for an afternoon nap!
Being open with your boss/colleagues so that it is accepted as normal if you have to do something strange like get up and move around in the middle of a meeting, or do a few stretches whilst taking a phone call. People got used to me popping pills, or walking down the office like an 80 year old.
Make sure you take time to relax and look after yourself. Working may mean you don’t have the energy for much else and it is so easy to try to do too much. When flares were bad I did need to take sick leave, but overall working acted as a positive distraction from some of the challenges and also meant I could pay for help in supporting my fitness and well being, so until lockdown started I had regular (gentle) sessions with a physio and personal trainer and loved a pamper day. Which in turn I feel helped enable me to keep working.
Sadly I have now got to a position where it isn’t possible for me to work and am just in the transition stage of having to get my head around that and what it means to me.
Listen to your body, but a diagnosis doesn’t necessarily mean the end of what you have worked for. Jan x
Thank you Jan for your lovely an helpful reply sorry to hear you not need to give up work wish you well x
Hi there. Sorry to hear your diagnosis.I have had ME for 30 years plus with many other health issues. When i was first diagnosed in a top London hospital, before ME hit the media, i was still able to carry on working. They prescribed me Amitriptyline to help with insomnia and neurology pain, i am still on it now all these years later.
Unfortunately my health began to get worse and my employers were very kind by allowing me to drop how many days i worked.
My health was getting worse and was monitored constantly by GP.
I was referred to pain clinic where they suggested i use a TENS machine for pain as it was very discreet and i could wear it 24/7. Pain clinic gave me a phone number and code to use to buy my TENS. I would have been lost without it.
I wish i had known about the TENS when i was first diagnosed as I'm sure i would have been able to carry on working.
I can no longer work as i have many other medical conditions beside ME.
I hope that this may help you to continue to work.
Good luck and god bless 😊😊
MalC
Thank you for your reply, I do already use a pain pen which has got TENS technology and it help a lot I was thinking about investing in a tens machine so will deffo look in to that, I'm waiting on a appointment at pain clinic so 🤞 thank you take care 🙂
Hello I have fibromyalgia and the pain nurse suggested a tens machine and offered me an appointment in a tens clinic to show me the basics, so think it's meant to be good, I can always feedback.I'm also trying to juggle a full time job and my pain seems quite relentless.
So tough and feel like friends and family just don't really understand 
Wish you all well, 💛
How much have you researched POTs? I have Posts as do 7 other family members. We all have either RA or Lupus and elements of fibro. But one of the hardest thing to manage is POTs.
POTs UK has a really good website which has alot of information on it. Both for yourself and your GP. Don't be frightened to print the GP section off and take it with you to an application. I did and the GP put some leaflets in the coffee room apparently. Not many people know about POTs hence it is widely under diagnosed.
My top tips for managing my SLEz chronic pain and POTs are
1. Get a good rapport with your GP and try to see them consistently. It will be better for continuing care and you need a GP in the know.
2. Excercise. With POTs swimming, recumbent cycling and rowing are supposed to be very good but because of other issues I found this difficult so I bought myself a treadmill and I walk on that everyday. Make sure you don't overdo it and raise your heart rate to much as you're already naturally tachycardic.
The aim is the strengthen your calf muscles to act as a pump so your blood can be pushed up into your body.
3. Cut caffine. Reducing caffine and processed foods from my diet has helped immensely.
4. Small frequent meals means that you don't suddenly get a drop in your BP or spike in your HR.
5. Watch what meds you take. I'm not sure if you are medicated for POTs? I am. Typically people with POTs are very chemically sensitive some medications may make you have palpitations. Amitriptyline was a nightmare for me but I seem to be able to tolerate pregablin if I stay on beta-blockers.
6. If you have a desk job it might be an idea to wear compression stockings. You can wear black ones descretely under knee length boots in the winter but they need to be class 2 and properly measured. You can buy them in the internet (I think) but should be available on prescription. I choose black ones. But remember that it is one prescription charge per leg!
They really worked for me and my consultant said they would help. It was the difference between being able to be on my feet and deliver a 45 minutes teaching session and be laying on the floor with my legs in the air.
7. At work I found it helpful to have something under my desk to elevate my legs on. A bit more blood in the brain than the toes was always good.
I hope some of that is painful. My Pots is now pretty well controlled. I drink about 5 litres of cold fluids a day. I'm sure someone has spoken to you about salt and fluid and it does make a difference but has to be cold fluid as it triggers the vagus nerve to constrict.
Do you know if you have primary or secondary POTs? You said you have ME so if it is down to deconditioning then there is a good chance that things can really improve.
My POTs only goes array of I am dehydrated, if I get an infection or if I have a vaccine. (Like recently).
I had the covid jab the other day and I now have alot of coat hanger pain as my PoTs has flared up but it will settle. It's just bloomin exhausting.
Take care and keep posting.
Hi, if you have not already done so, you can download a copy of FMA UK employment booklets at fmauk.org/publications
An Access to Work assessment may be useful if determining what aids /adjustments may enable you to continuing working.
I feel the same. I have done the same job for the last 30 years. But it's now such a struggle. Half way through the day I just want to sleep..I'm slowing up I keep double checking everything.and when I wake up with banging head ache I feel I shouldn't go to work but I do.so I know your worries I used to love my job but now it's just a job this condition has just taken over .I try to explain to people I work with some understand but others think I'm being lazy.i wish I could give you answers all I can say is do what your capable of don't over do it .
Hi Sam, let me wish you a very warm welcome to our group. I have been dealing with fibro for 40 yrs now. The one bit of advice I would give if I was asked is don't worry about the future. Concentrate on the hear and now. No one knows what tmw will bring never mind years from now.
Listen to your body. There will be good days and bad days the same with any chronic long term illnesses I'm afraid. But its how you deal with those not so good days that will help you the best.
I do believe your mind set is the best tool in your fibro repair kit.
What I do is always remind myself fibro is not terminal. And even on my worst days I never spend more than one day in bed. Sitting in a chair is better than laying in bed for days.
Keep moving if its only 10 mins here and there around the home, garden or office. The less you move the more it hurts. The more it hurts the less you do its a vicious circle.
I see you've left your post unlocked to this community only for privacy reasons you may want to lock it. Also locked posts tend to get more replies for obvious reasons 😊
I hope you have a good day xx
Momo
Thank you for your reply 😊 I'm not sure how to lock my post x
Hi Sam, this link will show you how to lock your post.healthunlocked.com/fibromya...
If you need further help please just ask xx
Hi SamL7 Sorry to hear your overloaded with pain. I have had chronic back pain and nerve damage to my left leg for 21 years now and neck problems causing pain and shaking down my right arm. My doctor signed me off work immediately as I worked in a children's nursery. After 2 back ops, the second to remove very loose metal work which has caused the nerve damage I got back to work but office work. I started my last job at 30 hrs a week in 2007 using just a walking stick and left 2013 in a wheelchair.
I had a work assessment and got a desk that went up and down, a high foot rest and a chair to suit my back. Unfortunately it took 3 1/2 yrs to get the right one. I was advised to take micro breaks, move every 20 minutes. Unfortunately sitting was what made my condition worse. I tried a number of tens machines and didn't get on with them but due to awful coccyx nerve pain I looked again and found a wireless one by Med>fit that has larger patches and can work on 4 different areas at the same time and I'm getting some relief. I found it on amazon. My work even automated some doors when I had to use my wheelchair. They really tried to help me stay working. I shoul have reduced my hours but was going through a nasty divorce so didn't feel I could as I had custody of my 2 teens. I hope you get some good advice from all the replies you've got.
Hi Sam - I think your attitude is great towards working - trying to find solutions.. I managed to work for a long time and still am - you just have to be creative right! I would be doing you a disservice if I didn’t mention the words of another illness that presents with very similar symptoms. I was diagnosed with fibromyalgia and chronic fatigue (and a whole bunch of other things, migraines, chronic pain) - it took doctors a whopping 42 years to get the ‘right’ diagnosis (which POTS is a bit of a red flag for) is also a very common with - have you looked at Elders Danlos Syndrome - nothing to be frightened about (it’s a genetic condition).
I’m much happier since I’ve been correctly diagnosed - rather than having a very long list of symptoms, they are encapsulated in this correct, provable, genetic condition. Now you might not have this at all, but when I saw your symptoms I had to say something, there are so many of us that have been diagnosed with those and it’s turned out to be EDS.
We have a lovely community of zebras if you ever do need us!
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