Hello All,

Does anyone know anything about Arachnoiditis please?  Like many others, I am struggling to get a diagnosis for my condition.  I put all my symptoms into Google, and that's what came up.   The causes and symptoms fit my case  exactly, so I am going back to my GP on 13th May - the first non-urgent appointment I could get - to ask for a referral to a consultant who might know about this.   Any help or advice from anyone would be very much appreciated.  I also have various other problems connected with spinal damage and arthritis, bursitis, lipoedema etc, but no-one seems to be very interested.  The morphine type painkiller patches etc made no difference at all, and I am getting a bit desperate!

I hope everyone is having a good day.

16 Replies

  • Unfortunately, with chronic conditions, they often seem to lose interest.  Good luck with your latest findings but don't be surprised if google is lying to you.  It often does.

    I know the frustration of trying to pin a symptom down.  For years I complained of not being able to hear only to have the audiologist tell me my hearing was perfect.  So frustrating.  Google eventually came up with the solution in a discussion on a blog.  Turned out it was a processing disorder.  So the audiologist was right, my hearing was perfect, but I was right too!

  • Thanks for replying, it's nice that people care enough to do so.   Even if it turns out my self-diagnosis is correct, there is no treatment, or cure - I would just like to know what it is causing me all this pain!  The attitude of the last pain doctor I saw was more or less "hard luck, nothing to be done".  Ah well, I'll keep trying!

  • Tell me about it!!  All that time I went through (decades) trying to get someone to just believe me was so frustrating.  What's more it had a deleterious effect on every aspect of my life.

    Fingers crossed your GP will listen.

    In the meantime, do you use coconut oil (cold pressed) at all?  Or ghee (grass fed)?  I'm just thinking that these might help with at least a couple of your symptoms.  Both can be used inside and out, though coconut might smell better as a rub ghee has better properties. 

    Also look at LCHF, especially with reference to Keto.  The keto diet works by encouraging the body to use fat stores.

    When you get to your doctor you might also ask for investigation into you thyroid levels - and make sure they don't just test for TSH - you need full bloods including T3, and oestrogen/testosterone/progesterone levels.  Check out this link - you'll have to use google translate unless you can read Dutch

  • Thank you so much, I shall look into all that.  Fingers crossed.  I have to go for a thyroid blood test this week, as I suspect my levels are low, and my tablets need increasing.  I think usually they just test for TSH, so I'll ask for the other tests as well.  Thanks again.

  • you might really have to lay on the pressure in order to get a T3 test, they really do not like doing it but stick to your guns.  If they still refuse, and you can afford, it then Thyroid UK has an arrangement with a number of labs for private testing (and a code to get a discount).  Tests are in the region of £80 to £100 but cover much more than just TSH

  • Thanks again.  It would be worth paying to have the test, I think.  Likewise, I will ask to see a Specialist in spinal matters, and have a private consultation, even though we are far from rich!  I just need to know what is going on with me.

  • If you aren't already a member of the Thyroid UK group on HealthUnlocked, pop over.  There are people on there very knowledgeable about thyroid & testing issues who are always willing to help and will tell you which is the best test to get

  • Hello

    Please describe any surgery you had and your symptoms.   I may be able to give you some advice or insights. I have nerve pain in my feet that I only started to have after my back surgery 9 months ago that has not gone away.  


  • Hello Jerry,

    Thanks for taking the time to reply.  I have spinal arthritis, bursitis, lipoedema, all of which cause their own kind of pain, but what makes me think I may have arachnoiditis is the pains in my buttocks, groin, tops of legs, all down front of legs, like something gnawing the bone.      The pains are like electric shocks, not constant, but very very sharp.  I cannot bear to put my feet on the ground, and if I do, my legs give way.   I get feelings as though something is crawling on my legs, and sometimes feel as though water is splashing on them.  Worst, though, is the pain.  I try to be brave, but it's difficult.  I also get a lot of headaches, but I think they may be caused by the Atrial Fib, which I am having practically all the time now.   What a tale of woe!

    I had two discs removed, and spinal fusion, several years ago, which has been fairly unstable ever since.  Also had myelograms, epidurals etc, over the years.  At present, I just want a diagnosis!  No-one seems very interested, just say there's nothing to be done.  I have tried all the morphine patches, etc etc, but nothing helps the pain.

    Thanks for listening.



  • Do you sit with your legs raised?  I used to have similar symptoms until I started sitting with my ankles at hip height at every opportunity.  It won't cure the lipoedema but it might alleviate some of the problems.

  • Thanks linlow,  Yes, at the moment I am spending most of my time lying on the bed with the foot-end raised, which does help a tiny bit.  Lipoedema brings it's own set of problems, including pain, doesn't it?  Still, we try to keep going !


  • Hi Sandra

     I may well be stating the blinding obvious or you may have had this looked at already but you describe the symptoms, perfectly, on a herniated disc putting differing pressure on the nerves at that level or/and a sacroiliac joint issue??

    I apologise if I'm insulting yours or your doctors' intelligence but lots & lots of people on here suffer from the nerve pain and other symptoms you describe?! Arachnoiditis symptoms are so similar to prolapsed/herniated discs that unless you've had that ruled out, it may well be worth exploring it.


  • Thanks RAYJAYC for replying.  I had spinal fusion and double disc removal several years ago, so it probably all goes back to that.  The fusion wasn't as stable as it could have been, and has caused me a lot of pain on and off ever since.   However, the pain I now get is extra, and different - the electric shock feeling etc.  I am going to ask my GP for a referral, as I just want to know what the problems are.  All they say is that there is nothing more that can be done, and I can't have any more surgery.  I just want a diagnosis, to be sure, then I will try to accept the situation.  It shouldn't really be asking too much, but I'm fed up with being fobbed off with no explanation, just "go away and deal with it"!!


  • Definitely sounds nerve related; maybe another disc issue? I get the 'electric shock' feeling and involuntary 'jerks' with it. When my muscles go into spasm it's triple! I've got degenerative disc disease & disc bulges alongside scar tissue from three discectomies that altogether culminate in exactly what you're describing.

     Also have sacroiliitis on the right side which adds thigh & groin pain into the mix.

    Of course, everyone is different and their symptoms too.

    Best of luck, let us know how you get on.


  • Hi mssmps, Arachnoditis is just one of the diagnoses I have had in the past, and what it means is that the nerves are bunched up because of the loss myelin, but in the end I knew myself that my nerves were being pressed due to pressure when I move, but after many a hullaballoo with Consultants, they finally agreed that yes I had pressure on my nervous system , don't know why they waited so long to tell me something I knew and have lived with since I broke my back 30 years ago.

    So if I were you I would ask again and get MRI because I think Arachnoditis is a handy diagnosis for consultants to sit on .....Why ? I do not know, but it may just be a way of denying a diagnosis that would lead to them having to intervene to ease pressure on nerves, and that would mean you have to go on a waiting list.

    But I don't know much about your case and it may be that yours is very different to mine, on the whole I would advise you to press them because it's no fun if you wait too long and they then say it's too difficult to operate, best Alex 

  • Thanks Alex,

    MRIs are not possible, as I have a pacemaker, but a CAT scan should be OK, so I intend to nag until I get a diagnosis.  I am fed up with being fobbed off.  Trouble is, I am not a very forceful person, when face to face with medical people, but I am determined this time.   I just want to know why I have all this pain and odd sensations.  I'm sure they could find out, if they wanted to

    Take care.


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