So we are on our way to church and I'm reading an article (sumarizing) for my husband about leaky guy syndrome. When he says why don't you just forget about it. If I complained about every little ache and pain.
After all this time he still does not get it. I really want to cuss him out.

I'm so sorry alt...I know how frustrating that can be. My boyfriend is VERY supportive of me but my mom can be rather obtuse at times. I love her to death...she's my mom...but she has rheumatoid arthritis and she seems to think that all these things that trigger my pain can't hurt THAT bad. I mean...you don't see her crying about every little pain she has...right?

It can sort of rip you up when people say things like that...but the honest truth I think is that unless you have RSD then they really CAN'T "get it" in the full sense. It's nothing that I could have ever imagined before experiencing it...and given the choice between people I love not understanding and wishing they could (assuming you have to experience it to understand it)...I would choose them living in ignorance every time. I wouldn't even wish this on my worst enemies (and since some of them are directly responsible for the injury that caused this monster that's really saying something).

Unfortunately...knowing these things doesn't make it any easier or make you feel any less ripped up when people say stupid things that are...shall we say...less than supportive.

Take care.

Hi alt

Catra is right....people often don't really mean to hurt you that much, they just haven't a clue, and they really do think a bad back or earache is the worst pain has to offer...unless you are actually in labour or just lost an arm. They can't imagine a worse pain, certainly not one that you have all the time with no obvious wound... We aren't thrashing and screaming every minute. I mean, we don't have cancer do we?

I try to think of the general ignorance and misunderstanding as just another symptom of CRPS that I have to accept and make my way through as best I can. I didn't ask for it, I can't do much about it, I just have to endure it and hope that it gets easier with time.

It's hard though. You want to change their opinion, you want to educate them, but if someone can't hear what you're trying to say, they just won't. So what can you do? You can go mad trying, reasoning, showing, talking. You can annoy them by going on about it long past any initial interest. Or you can shrug and remember that one day, something will happen to them and they will realise that life just isn't that simple. Maybe they will regret their attitude. Maybe not...

As far as the pizza goes, I'd steer clear if I were you... The cheese is dairy, which can cause issues if you are sensitive, the wheat is well...wheat, which is a pretty common thing to have a problem with...and the tomato is pretty acidic on a sensitive stomach. Plain foods are best until you know some more, although that's really hard about the rice. I too thought most folk were good with rice. Was is plain rice?

Try not to get completely empty, it's not good for you in lots of ways, and it means when you do eventually have food, your gut goes into overdrive to try and get those nutrients into your bloodstream quickly. Little, regular and simple is probably kinder. Try some softish cooked veg (raw veggies might be asking a lot right now), fish, chicken etc, and steer clear of anything spicy, heavy, rich, creamy, etc. Anything too nice as I used to think of it Processed foods can be tough on a delicate system as they contain so many hidden ingredients and additives.

I know it's a nightmare and must be driving you mad, but keep plodding on - hopefully between you and your docs, you'll be able to find a diet you can eat safely. At one time I couldn't eat any wheat, barley, bran, gluten etc, couldn't tolerate anything dairy, and couldn't eat anything processed. It was awful. But in time I found things I could eat without the pain and other nasty symptoms, and it's been worth it a hundred times. I'm never tempted to 'cheat'! I'm lucky now to have got some dairy back, still not milk or cream though...

I'm thinking of you and have my fingers crossed for some better news. Take careof yourself.

Bram.

Bram, at times like these I am quick to be reminded who and where my true friends are? The ones who understand me, the only problem is I can't pick up the phone or come over and complain to you all. Lol.
But thank you guys for being there this forum.
The rice was paraboil and white. Tried 2 times in one week. I know I should not be doing dairy but I am not ready to give up my coffee and half and half.
I started gathering some information today about fodmods diet. I will also have to add in hiatal hernia and rsd.
As I stood in the store today at the little gluten free section, I read the back of ingredients. If it was wheat free it had rice in it. So I I feel I'm in trouble .
Biggest thing; coffee and dessert. Love both!

Thanks for being there I will keep you posted. In the meantime I will keep plugging along.

Hi alt

Just been reading up on rice allergies. Turns out its rarer but perfectly possible to have a sensitivity to rice. This page has baby pictures on lol, but it's a mum whose son is allergic to a few things, and the lists are helpful and definitely not aimed at kids!

http://multiplefoodallergyhelp.com/?page_id=439

Take care today and hang in there. You'll find a way through...

Bram.

Well I'm reading these posts and now I'm wondering. I was about to go onto one of the other sites and ask if they thought my taking of increased OxyContin as demanded by my PM and NS last week could cause me gallbladder problems.

Then I read these and I started thinking.

I had polycystic ovarian disease syndrome and after 11 emergency ops throughout the 80's yet another cyst imploded this time directly into the ovary and blew my right ovary to smithereens, they had no choice but to remove it doing a partial oopherectomy, taking the right Fallopian tube as well in 1989. The remaining ovary developed another cyst in 1993 and damaged the remaining Fallopian tube so they had to remove the left Fallopian tube leaving the left ovary intact.

I developed a tumour in 2001 and required a total hysterectomy removing the remaining ovary, uterus and cervix. I nearly died on the operating table the first time she operated, she botched the surgery and nicked the bowel, but didn't own up to it. Subsequently I developed an infected hematoma followed by peritonitis, regular temps of over 103 extremely ill, rushed in and out of hospital and even her anaesthetist came to me on the ward and said get out of here as soon as you can. Then I developed MRSA, I haemorrhaged twice and the ultimate kicker a fistula between the bowel and the vagina cavity with faecal matter oozing from there. That gave me third degree burns from the faecal acid, I finally had to have 12 inches of my bowel removed.

Blow me the ovarian tissue grew back again the following year and I had another gynea go in and attempt to remove it a 2nd time in 2002 and by 2003 I developed a mass that blocked the right kidney, so they put in a stent in the kidney tract until they could remove the mass. That year I required further surgery to remove it. After that he put in a zoladex implant and nuked any possible tissue. End result, I now have a dodgy bowel and since 2005 have suffered 8 extremely dangerous bowel obstructions. The specialist has said if I have any more intestinal injury that requires surgery I run the risk of losing my bowel completely, it shutting down and face high probability of death. I work hard to manage my bowel obstructions taking movicol sachets daily.

In 2012 I had a grand mal seizure attributed to acute headache pain, and during the seizure fractured 3 thoracic vertebrae, 2 ribs and had an s1 stress fracture.

So now I'm here in 2014, I've got failed back surgery syndrome, from a double spinal fusion in 2013 to L4/5 and S1 and suffering extreme and constant chronic pain in my lumbar, thoracic and cervical so after Rhyzotomy difficulties that caused the seizure in 2012 we opted to have had a SCS implant put in December 2013. Once again they again had trouble and could get only one lead in so it's not working and now I'm waiting for a paddle or yet another spinal fusion to L2/3. For sure they intend to do another nerve block next week.

But my big question, is do you think I've got CRPS, the Rhyzotomy to the thoracic region in 2012 left me unable to wear clothes on my back for months as the burning pain was excruciating, my pain seems to be spreading and I think I'm at the end of my tether. I told my husband the other day I had this strange pain to just below my right rib cage and it's getting worse, I told him today and I fear we are in for another round of hospital merry go round. I wrote my PM this morning telling him the nerve block he did on two weeks ago gave me relief to my left hip for 5 days but the pain has returned. I want them to either fuse the L2/3'or put the damn boston paddle in and remove the once lead as it's not working but when I had the SCS trial I'm sure I had relief.

At this stage I think I'm cracking up and I'm losing my identity, my life revolves around pain, I'm a prisoner in my own home and I'm over it. I've been doing 30 to 45 min walking exercise 4 times this week, first time in ages but it's caused me to set back. I can't test if the one leads working if I don't do anything can I.

Anyhow, now I have this gallbladder pain or maybe it's liver. I'm just so frustrated I'm going from bad to worse by the week. The left hip pain has returned and the right hip pain, thoracic pain, cervical pain and left arm/ hand pain has remained unchanged. The increased meds helped but I fear another bowel obstruction is around the corner.

Any suggestions?

Crumbs. What a hellish journey you've been through PamelaJune. I'm so sorry.

Firstly, it sounds as though you have a case against your first surgeon who messed up your op and nicked your bowel, etc. that seems to have set so much else off...it's appalling how much damage she did. I'm not one for advocating the legal damages process, but for something that devastating and just atrocious in terms of poor surgical skills, I'd explore it if you haven't already. Sounds like you need all the help you can, and sadly money is everything with medical treatment.

I'd get another opinion on your pain for sure - a neurologist or pain specialist who has experience of CRPS and can give you more of an idea. In the meantime I would note down any symptoms and photograph any visible things that you think might indicate CRPS (rashes, colour changes, blotchiness, hair/nail differences). Doctors like any evidence you can help them with in making or excluding a diagnosis.

The new pain in your liver/gallbladder region certainly needs investigating, but make sure you feel very confident in the specialist before you let anyone cut into your poor body again, and if possible get a second opinion on whatever they suggest. I hope it is something that can be sorted out without too much more stress for you.

Just keep fighting to get some treatment that makes your life a bit better. You deserve better than what's happened, and hopefully you'll get some answers and be able to find treatment that gives you some peace from the pain.

Take good care of yourself, and let us know how you get on.

Bram.