anyone out there with auto-immune/chronic pain issues before dx?

Anonymous

Ginger- Sorry about your fibro dx.  It's kind of a good news/bad news thing.  The good news is probably that you finally have an answer for why you've been feeling so crummy.  The bad news is there's no easy fix.  The other good news is doctors are finally acknowledging fibro and are able to dx it.  And more research is being done every day trying to figure out how to treat it.  

I just posted about a site I found called Lifescript (lifescript.com) where they now have a fibromyalgia health center with some good info on there.  Just go the site and put in fibromyalgia in the search box.  I think the health center is one of the first ones that comes up.  Fibro is definitely trial and error.  After awhile you'll figure out which triggers make it worse and what you can do to make it better.  Some meds work for some of us and some don't so I'm sure your doctor will be trying different things.  Good luck with everything and just know we all understand what you're going through.  (((hugs))) 

SuzyBlue

Hi everyone, I just found this thread and found it interesting. I don't have the conditions that you speak of but I have a chronic pain condition that affects all my joints and my spine. It started 15 years ago when I was pregnant with my fourth, just in my fingers and now is everywhere. Of course I have been unable to be 'labelled' with a particular syndrome. For a number of years I was told it was probably a form of rheumatoid arthritis but a couple of years ago after moving to Auckland, I was told after attending a pain clinic that it was to do with the pain pathways opening up through my body and not closing again. Either way, not curable and I will just have to live with it for the rest of my life (and wonder how much worse it will get).



I am on fairly high doses of medication for it and administer extra doses of pain relief myself (prescribed by my dr) according to how I think the day is going, sometimes when my hips or neck are bad I need to up the codeine other days I have very little.



Alongside the pain is chronic sleep problems for which I was taking natural remedies (with limited success) but since being diagnosed last Christmas and having 3 surgeries I have been taking sleeping tablets. I have recently taken myself off them and struggling to deal with the resulting sleeplessness.



Anyway, I went to my chemist (pharmacy) last week to pick up a renewal of my medications - admittedly there were quite a few boxes as i had run out of everything - and the woman behind the counter started lecturing me about the dangers of being on codeine and pain meds etc! I was quite taken aback and just said that my doctor was still happy with the levels I am taking. I went away thinking, she doesn't know me, she has know idea what I have been through in the last 7 months let alone the last 15 years! Am I wrong to be annoyed at feeling accosted that way?

Ginger48

I don't think you are wrong to be annoyed but I always feel like the pharmacists have a better knowledge of drug interactions and dangers than the docs. Of course the tone used when raising questions would certainly make a difference to how i felt about it. It might be worth asking your dr to review everything that you take to get reassurance that you are still on the best treatment plan unless that has already been done recently. I find that sometimes they keep adding drugs to our list without considering the whole picture.



Have they ruled out fibromyalgia? From what I know so far, pain for longer than 3 months and sleep disturbances are two of the bigger symptoms. I hope you find some relief soon.

barbe1958

Suzy, I would have just dared her to walk in your shoes....   I, too, think you have FM. Describing the "pathways of pain opening and not closing" again is classic FM. We have too much of a substance called "P" and it keeps pain reactions going when they should have stopped. Sleep is the NUMBER ONE defense you have against this FM. Everyone listening??? You MUST get as much sleep as you can. I sleep 12-16 hours a day and can barely function at times even with that much. I am on Morphine Sulphate for my spinal stenosis and that doesn't even touch my FM pain. I can't imagine how bad I'd be without the heavy meds.

I did a big boo boo yesterday. I always tell surgeons about my FM so they can pre-pain med me, but forgot yesterday in the rush of the surgery. I had a pacemaker put in yesterday and had a VERY rough time of it! I was told I'd have 'twilight' anasthetic and the surgeon said "No, nothing!" They had to medicate me twice for anxiety (once before we started and then when I was reacting to the pain) and then FINALLY he had them give me Fentanyl. Sheesh!! It friggin' HURT!!! Of course, I was a 'bad' case where they couldn't find the vein and had to go on a witch hunt for it through the muscles of my chest...sigh. Pretty sore today and annoyed that I didn't remember to advocate for myself. Not their fault as they were giving me Oxycontins (but I eat those like candies). So, one of the down-sides of taking so much pain meds is that when you need even more, there's not too many options for your surgical team! I would have liked to have been 'out' for the surgery. The needles required for the local totatlled about 8-10 I'd say.

SuzyBlue

Thank you for your thoughts. I looked up fibromyalgia and it does appear that I have some of the characteristics, but my pain is definitely in my joints rather than muscular, still I will put it to my GP next time I see her. I am taking gabapentin already for pain relief which is one of the medications used for fibromyalgia so maybe she has the same suspicion. It has been 15 years so it would be a relief to finally know.



I realise that pharmacists do have expertise in medications and their effects but still unless you know the whole story of someone's medical condition I don't think they have a right to criticise, especially in front of other customers in the shop.

barbe1958

Suzy, it's muscles that pull on your joints. That's why I don't believe in Chiropractic treatment without massage. I honestly can't tell if it's joints or muscles that cause my pain. It's just all-encompassing.

mkkjd60

I was wondering whether any of you had Oral Lichen Planus prior to dx.  My mom was dxed stage 2 bc but a few months prior she began to have trouble with her mouth...sores and the like.  Turns out she had an autoimmune disease Lichen Planus which attacks the soft tissues of your mouth.  I have always believed that between the arthritis and the lichen planus, autoimmune played a big part in opening the door for her cancer.

dtad

OMG! I've been looking all over this site to find a thread like this. I've had a very debilitating autoimmune disease that began15 years prior to my breast cancer diagnosis. Adding this to already difficult life has been very challenging to say the least. I would love to talk to some other ladies going through this

SuzyBlue

Hi dtad, sorry to hear from a fellow sufferer, but glad you found us! May I ask if you have a name for your disease? I've had my chronic pain for 17+ years now but I'm not entirely convinced on what it has been suggested it is. Oh well, no cure anyway so it's pain management and learning to live with it. It seems cruel to add cancer into the mix, but maybe we are already made of tougher stuff because of our prior experiences