pain, pain and more and more f...pain :(

[annken]

in SO much pain, everywhere aches.
i have made appointment with rheumy but i dont have much faith in him.
i never felt this pain in all my life, and need to get a grip on it.
i have primary sjogrens and also fibromyalgia, plus crohns, and ceoliac disease, i also have generalised dystonia, hypothyroidism and much more. was born with Congenital Rubella Syndrome.
i am in agony, so much so i could scream.
even the clothes on me hurt too much when they touch the skin.
my muscles, joints and surface skin are in  massive flare.
am doing far too much for i have identical twin with a neurodegenerative disorder. after 40yrs apart in different countries she has come home and we literally do not know each other, and i think, hardly tolerate each other.
i have a bad housing situation and had to flee my social housing unit, due to anti social behaviour. i am staying with my twin but it isnt easy.
i am looking for a place of my own, not easy either for money is short.
practically every day i am up at the social housing unit, taking more of my possessions away, using the wheelchair as a means of getting the boxes to the adapted van.
i cannot continue with all this.

[bloodless]

Be adamant with your doc you need pain meds. They won't do much unless you really let them know. If the pain gets too bad before your appointment, go to the ER. Hope you feel better.

[Dolly Dimples]

Hi Annken. Such a sad story,
                   I am sorry you are dealing with such pain among all your housing problems.
              Bloodless is spot on , you must get some pain relief.
          All I can do is wish you well, and a happy outcome .  Dolly x

[Jenny]

You poor thing. Don't be afraid to ask for pain killers. They have given me my life back. Gentle hugs and prayers for you.

[Narablueeyes]

Welcome annken!  Be forceful w/your doctor.  Either they really don't get it or they really could care less.  Either way, sometimes it takes us standing up for ourselves and saying, "enough is enough!!  I can't take this anymore!"  Keeping positive thoughts for you.

[Joe S.]

If you can not get anything out of your doctor, PM me. I have tips on alternative methods. You can find them by searching this site also.

[soycoffee]

Hi, Annken

I've been going back and reviewing your posts. As I do, it becomes more clear that your pain is, as you said once, "neuro pain." There are two things I know that work for neuro pain of feet, legs, hands, skin -- or peripheral neuropathy. I know this from experience.

They are the drug Neurontin/gabapentin, which has a pain reducing effect, although the functional losses in use of feet and legs tend to remain. This starts at a low dose with an almost unnoticeable effect, and builds to as much as 3600 mg/day. It is not a cure, but relieves the zaps and burning and tingling and other sensations. It is an anti-epileptic drug, and cannot be stopped after a certain point of use. I have gone up to 3600 mg/day, and then, since starting methyl B12 sublinguals -- gradually increasing dosage -- have been able to reduce back to 300 mg/day of Neurontin/gabapentin.

Methyl B12 is available in shots. Most shots in the UK are hydroxycobalamin, and that is what is used in the University Hospital here, for people who have had gastric bypass.

My guess is that you are getting a very low dose and frequency of hydroxycobalamin, and that shifting to subcutaneous injections of methylcobalamin (methyl b12) more frequently than once a week would improve your peripheral neuropathy pain (neuro pain). It has done so for many other people.

Is this your neuro doctor in Ireland that you'll be seeing?

Tell him, "I'm here today to see what you can do for my neuro pain. Aren't there two general starting treatments? Hydroxycobalamin shots once a week or more often, and/or gabapentin, in SPACED dosage increases. I promise to come back every day until we work out what it is that will stop this pain I'm in."

And then do that -- come back every day. If he doesn't like dealing with you, then he'll give you effective treatment just to get rid of you. Annken, this does not work with everyone in any situation. I've devised it for this particular situation of you, your neuro pain, and your doctor, either locally or the neuro specialist in Ireland. Don't try it on your Crohn's doctor, etc.

I think doctors should be forced to read your lament, with hot flames at their feet! It is very eloquent, as are many of your other posts.

Let us know how it goes, and what you have gotten from the doctor.

I am not a doctor. I have trained as a clinical/counseling psychologist, and have had CIDP, a form of peripheral neuropathy, for ten years. Effective treatments have been Neurontin/gabapentin, IVIg, and then, since 2009, sublingual vitamins as methyl b12 (gradually increasing to 60 mg/day).

The effective brand of sublingual Methyl b12 is Jarrow. International ordering can be through iHerb, using code SIG531 to get a $5 coupon on your first order.

You can find a lot of information on what has come to be known as the 'Active B12 Protocol' at the BetterMedicine website http://forums.bettermedicine.com/showthread.php/62327-Active-B12-Basics
It's research on an N=1 basis, over many many people.

Annken, it's kind of like learning to walk again.
Best,
Soycoffee

[annken]

ireland - neurologist once every six months if you are lucky...i will see a rheumy on wednesday but he is so laid back if he laid back any further he would fall flat on his back.
its like pulling teeth getting very far, but i also been to UK this summer to the specialist there and just the same...'keep taking the pills, you doing well!
yeh, like the photosensitivity is anxiety as well!
try wearing sunglasses in the evening with a main light on, thats anxiety?

[soycoffee]

Yeah! You want to do better, not simply "you're doing well." And I'm sorry I wrote so much without understanding.

Best,
Soycoffee

[annken]

oh i hope my 'attitude' didnt offend you 'soyacoffee?  i was feeling pissed off with the situation and not you at all, just trying to say wryly that i am trying to get the help i need and its an uphill battle.
take care, you didnt write too much!
xann