arachnoiditis and fire ants

[Heorte]

I'm struggling to find out whether the intense painful itches and feeling of nerve-jangling in my upper back, neck, ears and face is arachnoiditis or another form of nerve damage from my existing DDD, osteo in spine and neuropathy. I've had an MRI that was suggestive, but my GP is pretty useless only wanting to refer me to surgeon to have bone /osteophytes lasered off. Understandably I'm reluctant to have any surgical interference as I understand this can greatly aggravate Arachnoid. I've now got a physio appt. to try to loosen up neck that has almost set stiff (from original problems) but am a little concerned that even this may have knock-on effects , especially as this arachnoid thing seems to be outside most people's knowledge.

As usual, I need to find ways to help myself, so if anyone can confirm these awful symptoms by their own experiences I would be grateful, and also suggestions / advice gratefully received.

I thought my disabilities couldn't get much worse - fool that I be

[28CS]

Hi there Heorte ,

bear with me I’m working on it but wow I can’t tell you how refereshing it is to see even just the WORD Arachnoiditis mentioned other than in a private second opinion consultant report I had two years ago.

He stated initially he thought he was dealing with a diplegic man ( whatever that is ) , then realised I’d improved my gait as I’d moved about a bit after travelling for over 200 miles for the consultation.

My problems began with motorbike crashes , sadly I didn’t have the talent to match my ego I have to admit , but back in 1992 one big crash left me with a fair bit of damage mechanically to my body.

After much medical help ever since , and about every concoction of pain meds and anti depressant tablets too, I was treated by the pain clinic with nerve block injections into my spine.

The idea apparently was to switch off the nerve branches exiting my spinal cord , at specific places along my back , to prevent the damned nerves from frying my brain when ever it randomly felt like it .

What I never pieced together was the travelling .

I can lift weighty things if needed , but not without pain and only because I refuse to take it lying down as it were .

I’m physically not in bad looking shape for a 50 year old fella apparently , but to be fair , that’s nothing vain , just lots of commitment to trying to keep in strong enough shape to carry my injuries as long as possible .

I can go days without eating because it doesn’t dawn on me that it’s been days since I last ate .

I can eat whatever’s in front of me ( except blue cheese or olives lol ) and not put an ounce on nor loose any unless I’m stressed out .

Same with sleep really .

Today typically with my carer off , I woke in a haze of pain and reluctance to get up about 3pm , wasn’t sure what hurt more or where , then eventually got up about half an hour later once my head wasn’t spinning more than the room and I could figure out it was a new day , I had to do somethImg with it because I was still here , and then settled on the sofa with a coffee whilst contemplating taking my tablets or not yet .

Some days you really DO feel like an autopilot version of your old self and that’s just from the medication and pain .

The thoughts are random and like this probably shows I’m afraid , get mixed up even as you think or type them , compared tothe order you intended putting them .

So , meds’ ? Operations ? Quality of life changes ? Sacrifices made just to keep going ?

Everyone has these , we each do the best we can .

Then there’s this thing called ARACHNOIDITIS

My GP didn’t mention it when I saw him following my private consultation.

He did order new scans and xrays , but the consensus seems to be that , the injections themselves, caused scarring to the Arachnoid membrane that

protects the spinal cord .

It has an interaction with the Dura membrane that protects the brain , but links them both - brain and spinal cord that is , in ways I can’t figure on the whole .

Apparently my body no longer makes nerve repair cells .

This was confirmed after a tooth removal left me bleeding for 7 weeks .

It wasn’t anything new or sudden by the way so please please don’t hit the panic button , it’s just hat I’d not had to have any teeth pulled for years so the degenerative illness had whittled it’s way through my system with a free reign since the injections triggered the reaction.

Anyway , that’s as much as I can get out f the medical profession to date !

I felt awful, my own dentist went away and researched fo himself how best to treat me BECAUSE I had been diagnosed with “early onset arachnoiditis “ as his report worded it two years ago.

Why the hell doesn’t my GP talk to me about it ?

Be.ieve me I’ve tried to talk it through and so far he only treats the symptoms but can’t really discuss it with me because by the time I’ve eventually GOT an appointment when needed , I’ve blooming well forgotten by the time I arrive weeks later and the usual outcome is he keeps an eye on my mental and cognitive ability due to it depleting over the years .

He gives me a steroid oint,ent for the holes I dig on my scalp .

I don’t mean to do it , I’m not a stupid man , and it’s not a habit either .

I often get a shock like an electric shock go through my head and instinctively go to scratch at it like an itch.

Problem is , I’ve no or little at best , actual feeling on my scalp so I ca t feel that I’ve been digging holes with my scratching .

There’s your insects or spiders under the skin thing ! Yep - I too suffer a crazily mad irrational fear of spiders so I joke about it often , but how the heck do you explain it to people ?

I won’t sleep tonight till I pass out , that’s my norm.

I feel irritable at best , for example , as a retired sailmaker I’m tying to help an old sailor by making him a cover for his yacht to keep his price and joy more easily maintained come spring , but to also help ME have a sense of purpose .

I’ve got all this time , I’ve got skills I’ve been taught over my lifetime , but tonight I WANT to sew the zip in the front bit and have doggedly ignored taking my next does of meds for the last 5 hours now , but instead of having MORE cognitive functions for the delay in meds dose overdue , the damned pain is stopping me working out how to do what instinctive teaching has been so easy for so many years , except I can’t work out how to mark out a 4 metre piece of flat cloth.

That’s about the sum of things .

The plus side is ignorance perhaps because I’ve become more stubborn I guess , but I have my own yacht and many friends think I’m a hypercondriac because how could I have a yacht if I’m so ill?

How can I afford one to begin oth because I’ve been on medical related benefits since being retired as no longer fit to work AGAIN , back on 2008 ?

Truth is , the old bike racer I was had a collection of motorbikes and as a surfer and yacht racer I also had a VW transporter kitted out for travelling .

They all had to go the day I was last partially paralysed and the hospital had to notify DVLA I’d been paralysed over 8 days , kept on morphine for 12 days on a ward , and the DVLA decided I’m no longer fit to hold a licence .

I was forced to sell them all as I couldn’t I sure them to sit there unused .

There’s the money .

What people don’t see though , is the decline of who I was to the reluctant old fool I’m becom8ng in hanging onto what’s left .

I don’t sail alone , I’ve adapted the yacht to make it self sufficient , and the long age engineer I was before being retired on medical ground s back in the 1990’s ( they’ve told me to go home as too broken to work three times before I eventually ran out of options and had to so trust me , the people who think I’m on a great deal getting benefits have no idea the price of being yourself and I’m sure you too know this feeling ).

Anyway ,

I’m sorry , I started off hoping to share a bit of u derstando g that you’re not alone , that it’s hardly a long lost discease peop,e USED to get , and that it’s bloody high time if you’ll forgive the frustration , that people DID know .

I can list you the maybes , but that won’t help anyone .

I can list the failed procedures but again , that’s not much to go on either .

I’ve done a LOT of research into chemical engineering, biological synapses and brain repair procedures .

That doesn’t help either as it’s not stuff followed commonly by your GP or pain team .

What I find a little comforting though , is logging ( when I remember ) , the differences I witness .

Can be a cha Ge of meds , or just a different order in which I take the prescribed doses.

My GP is quite onboard with that as I have a carer every day and when I feel capable of such decisions, I log them on the white board in the kitchen for him to then talk to me about .

Maybe you have to hurt enough before you become the researcher or analyst.

I did use my time studying for a degree in Marine science, but despite a knowledge of biological and physical systems it rather needs a better memory and more frequent cognitive ability than I’ve got left to make use of it lol , but it sure was an amazing experience and gave hope of a new career one day if they can eventually help me .

Look8 g. Back ,

Never box yourself in because of what others claim about your health !

Always set goals - who cares if they’re barely possible? They’re YOUR goals and we NEED them because we keep living so need purpose

I’m thinking you a big hug right now because I can’t write more , I’ve probably waffled on and made less sense than I hoped to and that I’m sorry for Heorte.

I can’t think in short hand , nor write it , so I have to put things as they c e to mind , all mistakes included, but don’t give up ok ???

There is always the chance that ONE day , help might come !

We have to be here still though to BE helped .

Meantime , put one step in front of the other and take each day NOT at a time , but knowing that nobody can walk that day in YOUR shoes , they don’t know if they’re even capable , but we owe it to ourselves to do what we can because we can .

For now I’ll say gnite , I’m feeling disappointed enough in my lack of progress now to have a stab at sewing this zip on and reclaiming some dignity and purpose , and that dear friend , is no bad thing

Take care , sorry for rambling , look for the patterns in changes and log them.

One day you’ll present your GP with something he/she hadn’t considered , and that , we can do without even realising .

Best wishes

Mark x

[Heorte in reply to 28CS]

Hiya, and thanks for answering me. Sorry it's taken me a while to get back to you but I am laid up with a leg cast and computer access is a bit hit and miss.

Gosh you have been very much through the wringer but you have to persevere. I understand what you mean when you say about people who see you persevering to live some form of normal life and underestimate the effect of what you are coping with. I find it is a major depressant when people say"well you're always smiling so your back must be better" when in reality I'm half an inch away from tears or the next dose of drugs just to cope normally.

I am on a learning curve at the moment because I have been totally laid up for 5 weeks now having had one of my feet rebuilt as all of the bones were dislocated because of hypermobility. The rest time has calmed down so much of the nerve pain from my legs and back and within the last 2 weeks the fire ants feelings have reduced dramatically as well. However I managed to go out for awhile yesterday in my chair and hey guess what my night was spent with left sided sciatica and the burning hot toe syndrome. I have been in similar situations before I know that trying to maintain any normality and keep out of a wheelchair will mean I have to live with constant varying degrees of pain but I am desperately hoping that the arachnoid itis will stay away. Meanwhile if I can ask you a few pointers.

Who actually pinpointed that your problem was caused by arachnoid itis as my GP doesn't seem to even understand what it is , although it has been outlined on an MRI report?

Have you found any decent information /research that I can access online?

Have you received any specific treatment for that alone? Have you ever had any additional therapies that helped?

I recently had a major abdominal operation and didn't realise that the intense aggravation of the fire ants could spread to another area of my body which I believe may have been because of the epidural anaesthesia ... Any comments?

I find the whole medical system pretty pathetic in that one is not allowed to suggest or question a diagnosis and yet every time I have had a problem arise even from my 30s I have had to put up with deterioration until it reaches the point at which somebody says oh dear this should have been treated years ago and there's nothing much we can do now. Examples of failures include not recognising spinal growths from arthritis causing the nerve impact s and the outcomes of hypermobility that were picked up by a rare eye condition that was seen when I was in my late thirties and I'm now in mid 60s and nobody seems to know how to deal with the problems!

Yes, we have a fantastic NHS but the system is so political and complex that at the end of the day it's failing.

The only thing I have managed to chase up for myself was to have some physiotherapy on my neck at which time the therapist offered me acupuncture assuming it would help the fire ants syndrome! I would say that the acupuncture and exercises I was doing helped loosen up my neck muscles a great deal but the fire ants remained in place. I probably feel that you are the only person who will understand that there are varying degrees so that although I call them fire ants on here between my husband and myself I tend to call them savage hamster or evil guinea pigs and I think you'll understand what my mental image is of these horrific little creatures with clause that are at least a centimetre long hahaha.

[goingnowherefast in reply to 28CS]

Greeting from Australia l have Chemically Induced adhesive arachnoiditis and have researched cause and effect so disregard causation visit three of my blogs the first is Arachnoiditis groups around the world the next is regarding one of the major causes but in the end Arachnoiditis is the end result cheers

Arachnoiditisweb.wordpress.com

pantopaque.wordpress.com

pantopaquemyodil.wordpress.com

[Heorte in reply to goingnowherefast]

Thank you very much for your input. I cannot believe I did not find this site before or probably discarded it because of the chemically induced causative factors. I'm now trying to join a group whose information seems very helpful and I think it will be beneficial as it is also UK based. Again thank you very much.

[Kimmel7 in reply to Heorte]

Very interesting