I can feel that old fybro feeling again, in 2020 in full isolation from Covid, lack of mobility, developed fybromyalgia [undiagnosed]?

[Adlon57]

I was never able to be fully diagnosed as I am vulnerably disabled, then lo and behold, I developed a colourful reaction to AZ vaccine,in 2021 which reacted to my schwannomatosis NF3, then slowly very slowly wearing off, with all symptoms of the fibro [not a recommended way of getting rid of the condition?] then I had a "Transperineal Biopsies of Prostrate" on Monday, but me back in zombie mode, legs are so tired, whole body whacked, sleep almost none existent? I have JME epilepsy, it feels like the side effects of one of the medications Fycompa, which I stopped five years ago! Affects the body joints, want to go to sleep, but wake up more tired than when I retired to sleep, no incentive to talk to anybody? 😴😴DEAD TIRED!

[Blearyeyed]

Hi, I'm so sorry , you have had a lot to cope with.Have you got a friend , family member or carer that you can speak and get to go to appointments with you?

That helps , as they can help you answer the questions if you find it hard or you forget things.

They can also make you feel less worried or anxious when you are examined.

If you write down all the things you are feeling , or get someone to help you write it , you can show your doctor and it will help them to diagnose you.

I printed off a simple picture of the back and front of the body and placed a coloured dot on the points on the pictures where my body was worst.

I also drew arrows on another copy to places like head , stomach and drew a line from it to the blank bit of the page and wrote what I was feeling , like this

Head = Migraine / Neck Pain/ Brain Fog Stomach= Pain / Bloating

Feet = Pain /Swelling / Numbness /Tingling

This might help you get a diagnosis for Fibro , or for Chronic Fatigue and Chronic Pain

If you think your drugs have caused some symptoms tell them even if you aren't ready to try to get diagnosed with Fibro.

They may have something that can treat problems that were drug induced .

If you still take drugs that you think are giving you bad side effects it's a good idea to see if you can get that changed for something else and try it for a while just in case your Fibro and Fatigue is best healed by getting your drugs right.

They may have an anticonvulsant drug that you could try that helps treat Fibro as well as your epilepsy , and you could try it if it isn't the drug you take now.

Chronic Fatigue Syndrome can cause a lot of symptoms and pain , and it is common for people with all types of epilepsy because of how the epilepsy and the medications effect your body and brain. Seizures do give you severe Fatigue for days afterwards as well.

Unfortunately , Fatigue makes you sleep but you still feel tired no matter how much sleep you get. Tiredness , on the other hand , can keep you awake all night.

Try and rest when you need to but also keep mobile as much as you can , even a 5 minute stroll and gentle stretch every hour starts to break the feeling of Fatigue and heavy body feeling. It does feel like you are trying to walk in wet concrete when you first start moving though but it does get easier and starts to make you feel more like yourself again.

A little exercise built up gently , drinking more water , a vitamin and mineral supplement and smaller , lighter meals can all help you fight the Fatigue and the Pain even though it feels impossible to do at first.

If you have Prostate problems as well you might need a special diet and that could help with the Fatigue.

Planning out your day with a balance of rest and light activity (pacing) helps with all long term illness.

Take care and keep posting , especially if you are feeling down so that we can give you some moral support too. Bee

[Adlon57 in reply to Blearyeyed]

Thanks Blearyeyed some good suggestions in there, ticks a lot of boxes, I am near the end of my tether, a lab rat. I have my own personal specialist, [and a good friend too boot!], varied conditions, I have terminal epilepsy but if anybody can learn from my groanings, see a hint for their relief of some of their pain, that will make my day? I have too many medical problems, too intermixed, too complicated, a "one off", I suspect a bit of exercise might help my particular plight the isolation of covid diagnosis of diabetes 2 and general lack of movement in a short period, obviously being a main cause, refreshing to see from an old warhorse like myself some good solid advice like yours laid down. I have some bad times and some really bad times at present!

[Blearyeyed in reply to Adlon57]

I know how you feel.

I have EDS Type 2 and it aggravated Dysautonomia in the form of Sinus Node Reentrant Tachycardia as well as Fibro . In my youth it was misdiagnosed as Juvenile Epilepsy because of the amount of black outs , petit Mal like seizures and neuro things it causes. I have built up a disorder or syndrome for every letter of the alphabet if you allow the non medical term Queasy for the letter Q.It all causes Chronic Fatigue , Chronic Pain and Chronic Migraine and various nerve related problems.

Until I got my new medication , and for two years before COVID , as well as during it , I was just about Housebound , or what I prefer to call " Living Life at Home" as it feels like a more positive mindset to have about it.

I can only do the gentlest or slowest types of movement to stop my heart racing , as even standing up is my Cardio.

It took a lot to accept it all and learn my " New Normal" and each time I think I have it licked a new issue pops up making me learn a new set of adaptions.

I suppose I should be thanking my weird body for keeping me on my toes , except for the fact that it is usually keeping me off them instead.

I'm currently stuck in bed nursing a hip injury after I popped the joint out of the socket on a simple walk.

I can't really go anywhere on my own anymore or be unsupervised in a shower or dressing just in case I pass out and I will probably need to get some help other than my family soon. Still , I keep looking for those silver linings , and it helps , keeping mental health as stable as I can reduces the Fatigue and nerve pain too.

The Fatigue is the bitter cherry on top of a nasty cake but while indoors , or on my worst days , I just try to stop it taking over with really gentle stretches on the bed or in a chair.

I found walking a little on the spot indoors quite therapeutic after discovering all of these Virtual Walks on You Tube filmed in some of the most beautiful places in the world or famous cities .

When I really concentrate on them and gently pace , or if I am able go on my recumbent bike , it really does feel like I'm actually there and helps my mind as well as my body.

Sometimes I just sit , breath and watch them , letting my mind go on a journey instead.

I've travelled to every country in the World in the last five years without needing a passport.

You might like to try it even if it just helps you feel a little less closed in .

Take care , Bee

[Adlon57 in reply to Blearyeyed]

It really does get a bit to much sometimes, getting one condition, just about recovered leaves me open to another? I had Schwannomatosis NF3 from the age of fourteen, in 1970, but it was not until my specialist diagnosed it in 2017, a big weight off my mind, we keep in touch regularly about this rare condition, I being the only one with it in UK [there might me another one?]. I have a exercise bike if you want, used to do ten miles a day on it, then 2017 fell off it with a seizure , new medication, landed on one of the peddles and smashed my chest, as I live by myself, did not realise how many ribs I had broken, five at last count, I can't use it now as I had a double seizure in 2018, I can't go up a ladder or use the bike, skull a bit wonky?Still thanks to Hunter I can now walk almost normally as Turmeric has righted my equilibrium to a acceptable amount👍 I can now get out a bit, a sister just around the corner from me is trying to get me to do a bit of "exercise" now the pandemic is over, and a bit of fresh air "will do me the world of good" now that I am now fully retired!

I have not had a holiday in eight years, being a claustrophobic does not help mentally!

Even my GP and specialist's agree reaching this time in life, should lower the old blood pressure!

[Blearyeyed in reply to Adlon57]

Well maybe you can pretend that you are on holiday watching those virtual walk films at home like I do . It's amazing how it lifts you spirits and makes you feel like you have been out in the World.

Thanks for the offer of your bike , but I can't use a regular exercise bike myself , for similar reasons to you , sitting on a bike with my legs towards the floor would make me pass out pretty quickly.

I have a recumbent bike , one of those with the big seat and the pedals at lower body height. It is a godsend as I can also track my heart rate as I go and slow down or stop before the tachycardia makes me dizzy.

I'm glad you have a caring sister near by I hope you get to enjoy some time outside together it will really help to fight that Fibro Feeling.

I've been taking Turmeric for years as it really helps reduce the IBS pain but I hadn't heard of it being used to correct your balance. I wish it would have that effect on me as well!

Take care , Bee

[Adlon57 in reply to Blearyeyed]

Yes I had a double seizure in 2018 broke my skull, affected my equilibrium, was not until 2021 after MRI of the skull, [told one more seizure and that was my lot!]Hunter suggested using Turmeric rather than Aspirin, as it would have affect with my other medications, after 2 months able to practically run to a car, dramatic difference! [not full only partial!]

[desquinn Partner Volunteer FMAUK Trustee]

Hi Adlon57 it is hard to reply to your points as you say you are yet to be diagnosed with fibromyalgia. Best to talk to your GP and get a diagnosis progressed. While you mention symptoms going away this could be because it was not fibro and with all the other conditions you mention it makes things a lot more complicated. Particularly with the schwannomatosis causing neuropathic pain there would be overlap.

You should progress getting a diagnosis and then see if any of the treatments help you. By the way fibro is not spelt with a y.

[Adlon57 in reply to desquinn]

During my isolation due my isolation period from March 2020 onwards I believed what I believed what was fibromyalgia,[unable to get diagnosed] BUT in February 2021 I developed a reaction to Astra Zeneca, [I am vulnerably disabled so go into group 2 for the 1st vaccine, thus February 9th 2021] reactions included heart flutters, severe headaches, severe shaking of the left arm and hand, schwannomas on my left arm, etc, whilst in hospital in June/July 2021, general bad health, a MRI of my skull, revealed effects of double seizure in Jan 2018, diagnosed terminal damage to my brain, wherefore my next seizure would be my last! [have had over 400 + seizures in 52 years of that condition] So I have spent the last year settling my 'estate' life etc, beliefs, I have become a Humanist! My Fibromyalgia symptoms had lessened somewhat during this period, then I had a "Transperineal Biopsies of Prostate" done last Monday 13th June as I had schwannomas on my prostate from March 2020, surgery had not been done due to the pandemic since that time I have had what I believe is Fibromyalgia symptoms return with a vengeance, but as Blearyeyed mentioned and I agreed some exercise might help me now! My spelling is probably due since those schwannomas appeared on my left arm, I HAVE to write with one hand! The result of the biopsy will take at least a month! I mentioned my period with Fycompa,Dec. 2016 -Nov. 2017 I have Juvenile Myoclonic Epilepsy, as during that terrible period I seem to remember as having symptoms/side effects similar to Fibromyalgia?Just had a complete medical checkup by my GP on Thursday 16th June 2022, still awaiting results on that! Nice actually shaking his hand first time since March 2020! Maybe Fibromyalgia MIGHT be brought up along there somewhere? As you can see I have many other things yet to be diagnosed, yes my health is complicated!