chronic fatigue due to adhesive arachnoiditis

[CrellyBabes]

I've had Adhesive Arachnoiditis for nearly 40 years. I'm 62. The disease has never  plateaued, but has continued to worsen until my previous 'life' has pretty much disappeared. I've had chronic insomnia since age 3 and that, added to the chronic pain, never allows me more than 2 hours of sleep at one time. As I've never been able to nap in the daytime, I'm really limited in my ability to sleep. Thus the chronic fatigue. I have no medical insurance, access, and occupy the financial cellar. I WAS diagnosed by an Orthopedic surgeon (before I was forced to quit teaching and had insurance), but have had to research as much as I can alone. I would appreciate learning of any kind of OTC supplement (especially amino acids) that might help me sleep for longer than 2 hour  (I take Valerian Root), and would help with the chronic fatigue. I wake after so little sleep because of a 'new' symptom, severe head pain. I've tried sleeping sitting up, but that causes pain everywhere else! Notice a dilemma here?!

[nick30]

I used to have ENORMOUS trouble sleeping too, and of course terrible tiredness all day long. For many years I went in search of sleeping aids but in the end the only thing that worked was what I told my dr's from the beginning, that I couldn't sleep as long as my pain was untreated. now I sleep well enough due to decent pain management. what are you doing to treat the pain from AA? anything? pls let us know
Nick

[BeeBee548]

A related discussion, Pain was started.

[BOK2Bjan]

Hi again.  I had never heard of your condition before, and was very interested - as well as very sympathetic to how difficult it must be.  Would you mind saying how you were diagnosed or how they think you developed the disorder?  I truly feel for you and am interested.

Blessings, Jan

[BOK2Bjan]

I posted a reply to this a few hours ago which took a lot of time reducing it until it was under the character limit.  I just now came back and it's gone.  It was mostly a cut and paste of an article I found that I thought would interest you.  It told of the multidisciplinary approach to adhesive arachnoiditis and the medications and pain treatment techniques most often tried.  The basic gist was that due to there being so many different symptoms, it had to be treated by more than one modality.  Pain is one of the most difficult aspects to deal with, due to the effects of the scarification of the descending nerves becoming basically "one" with the dura of the spinal column.  I was surprised to read that due to the usually very slow progression of the disease and the extreme plasticity of our nervous system, the body adjusts quite well and maintains function.  There IS pain, however, and quite a bit in the effected areas.  The symptoms are very much like MS (can be - both are so variable)  Because its rare, many drs don't look at it as likely unless all other possibilities are excluded.  There is usually an injury or trauma which sets it off, but not always.  They said that narcotics are sometimes withheld due to the mistaken notion that addiction will occur.  It mentioned that the addiction response of those in severe pain is different than that in high-seekers, and although dependence, tolerance, and withdrawal are all possible with narcotics, without the psychological drive to obtain opoids, the withdrawal is more easily tolerated.  It also said that doctors often prescribe benzodiazepams with greater frequency and ease than narcotics, when in truth, they are more addictive.  

I wanted to ask - have you been tested for sleep apnea?  Also, sleep is needed to make the neurotransmitters needed for the following day.  They help increase immunity and also pain control, so sleep is very important in your situation.  Even though it hurts when you arise, it hurts anyway, so , take the sleep.  Perhaps very very slow movement of a specific nature to help get you moving again.  I too suffer this symptom.  I have MS, and Sys. Sclerosis, as well as C-Spine stenosis and herniation & T-spine arthritis & Lumbar disc bulging & Sacroilliitis.  Many more problems, some autoimmune, some fatal complications.  Pain is something I understand and have empathy for you for.  Sleep is so important, perhaps you might want to look into the sleep apnea, as well as the other suggestions made by others.  I wish you the best.  Blessings, Jan

[Ghilly]

I was diagnosed with Adhesive Arachnoiditis seven years ago, and boy do I know what you mean about the life you knew being gone!  The one thing I am grateful for, at least until the situation changes, is that when I lay down to go to sleep, I can fall asleep immediately, but I think that's because I am ALWAYS TIRED!  I haven't slept more than four hours at a time since being diagnosed, because if I sleep past when I am due for a dose of meds, the pain screaming down my legs wakes me up.  I feel like I have pieces of broken glass stuck in the soles of my feet, and hot wires running down my legs under the skin.  

I am lucky to be blessed with a WONDERFUL doctor, I don't know what I would do without him.  I don't know how anyone could deal with this beast without a good, caring doctor.  I really don't.

I fought him tooth and nail in the beginning because I didn't want to get into the loop of being opioid dependent, but he maintained right from the get-go, and he was right, that the pain would ruin my life long before the drugs would.  I finally gave in and started taking oxycodone and I am able to work full time now.  Before the meds I was bedridden for one solid year.  

I swim almost every day (we have an olympic sized pool and we live in S. Texas where it's warm almost all year long) so that is GREAT zero-impact exercise, and I just keep moving and don't let the arachnoiditis get the best of me.  Just hang in there and keep going!  If you ever want to talk or swap "war stories", please feel free to PM me!

Ghilly

[nick30]

I know EXACTLY how you feel. I used to dream about being in pain too. often it would wake me and I would realise that I actually am in pain. And I also unfortuantely know how it feels to suffer from the pain of 'too much sleep". If i stay in the smae position for too long i feel like i'm 80 years old. do you take any anti-inflammitories? which ones? have you investigated 'sleep hygeine' ? these may help you, but more importantly you need to accept that only by doing EVERYTHING possible will you get the relief you need. could you tell me how your pain is treated and also if you have been to a psyhcologist as part of a pain clinic? When my pain was at it's worst, it found its way into every facet of my life, including sleep. the only way out was to fight it on every front. physically, psychologically, medication, sleep hygeine etc, literally everything that i could think of.
let me know if this helps and please provide me with more information, and please study sleep hygeine,you need to train your body to sleep. it is possible.
good luck

nick

[CrellyBabes]

Lots of truth here! Certainly sleep is impossible with huge quantities of pain, and I've spent thousands of nights playing all sorts of mind games (body-scans, self-hypnosis, visualization and assorted weirdnesses that are too bizarre to mention!). I'm currently going thru a can't-stay-awake period, but apparently I carry the pain into sleep with me--it infiltrates my dreams! My situation is really one covered by good old catch 22: if I sleep for a number of hours, about 5, I'm in such pain I can't function at all the next day, and if I DON'T sleep more than 2 hours...the results are the same. I'm grateful for your comments.

[J T Junig, MD PhD]

Babes, I don't know of any reliable supplements for sleep.  Melatonin, tryptophan, and others likely lack the potency to help you. In my experience the people who struggle the most with insomnia are the people who resent it the most;  some people come to terms with it, and resort to napping when they can, becoming 'night owls' to an extent.  I would imagine that by now you have learned all of the 'sleep hygiene' issues, and have tried progressive relaxation and guided imagery techniques.  The one reassuring thing is that your body and mind will take sleep when it is really needed;  the studies that demonstrated people going a bit crazy from sleep deprivation were in people who were actively kept awake by other people-- which becomes quite difficult, well before the consequences of sleep deprivation set in.