Need some advice

Ask your GP to refer you to a neurologist and a pain management clinic. You have that right. Make sure that you get copies of ALL medical records. You have the right to go to a different Doctor (GP) and start over asking your current GP to forward your medical records as well. Make damn sure you get copies and study what is being said so you can do extensive research. Functional neurological symptoms is enough to see a neurologist. Do you own research and learn. You have to. You are your own advocate. Believe me. If you can read my stories about my own disabilities and others. Your not alone. This is a site for advice and it helps when no one else close to you understands because they are not experiencing what you are. Don't take no for answer if you know for a fact this is serious or not. Best thing is to LEARN about what's being said and what's not. You will find out more information on your records. They do not tell you everything in person. That's a fact. That my best advice to you. I'm sorry that you are ill. Again I speak from major experience.

Hey girlfriend, Rocky gave you some good advice I couldn't have said it better! Most of us on these forums do understand and care and are going though the same and worse. Your my daughters age so I really fell for you. I wish I had a better answer or better advice. All I can say at this time is stay strong and stay as positive as possible. From my experience it dose sound neurological. You have my best

Hello Warrior,

I'm just an RN with full-body CRPS and a degree in Biology, so I can't offer medical advice, but I can do teaching. That said, here goes:

It sounds from what you've shared that you may have an inflammatory/autoimmune process going on, featuring signs and symptoms of centralization of pain, otherwise known as CS, or central sensitization. The sensitivity to sound and light are pretty good indicators that your process has become centralized, which means your central nervous system (spinal cord and brain) have been affected by wonky pain-signaling over a period of weeks, months or years. This is not an unusual thing to have happen in chronic pain; and your physician being flummoxed by your laundry list of problems is not unusual either. And many clinicians will call your issues evidence of a "functional" problem only. Meaning, basically, all in your head. Which it is, in a very real way, but just not in the way that doctor who saw you for 10 minutes meant it!

You definitely need help, and I strongly suggest that if you can manage it, you need to get to a reputable pain specialist (Board certified) near you. Google him/her to find out if they regularly treat patients with chronic pain conditions such as CRPS and small-fiber neuropathy, as well as Fibromyalgia and Ehler-Danlos.

Also check out the book Never Bet Against Occam, and/or online writings of Dr. Lawrence Afrin, who is the king-daddy of MCAS, a recently-recognized disease that can complicate or even mimic other diseases at times. Incidentally, there's no universal rule that says you can't have more than one illness or painful condition at one time. For instance, you can have CRPS or Fibro, and also have diabetes, or high blood pressure, or depression, etc.. This can make getting a diagnosis more complicated, but the right clinicians doing the right assessments and ordering the right tests, can make all the difference.

In the case of all your ailments you listed above, most if not all sufferers have been told at one time or another that they are faking their illness. Ofcourse, that just adds to the stress load of a class of pain patients; we need more stress like a hole in the head! As I said, even though I'm an RN, it STILL took me two years to convince my (very famous) pain doctor that I had CRPS; I got tested for everything except the Plague and Hoof and Mouth before he believed me!

I don't advise you to continue treating with any healthcare provider who doesn't understand chronic pain (pain lasting more than 2 months)and how it differs from acute pain (pain lasts less than 2 months). At this stage, a random doctor may suggest a nerve block, but if you have central sensitization, there is a good chance that A) The nerve block won't work, and to top it off, B) The trauma of the injection itself may actually cause a pain and debility flare that takes a long time to resolve. The occasional pain patient may have symptoms related to surgeries or injections, etc., for months or even years. That's CS for you.

You will have to advocate for yourself; do your reading about chronic pain and CS, print up journal articles to take to your doctors, therapists, and what-not. You are still quite a young adult, and sometimes it's hard to wrap your head around the fact that even older, experienced people who are experts in their field don't know what they don't know.

A lot has happened in the field of pain research, especially in the last decade. So if your MD or PT, NP, PA, etc., hasn't made it a point to read the recent medical literature, they have missed out on some important studies.

Two years is a long time to go, coping with this basically on your own. So sorry this happened to you.

If not already done, check out the YouTube videos of doctors such as Pradeep Chopra at Brown, Philip Getson at Drexel, Dr. Jay Joshi in Vernon Hills, IL, and Dr. Joshua Prager in CA. All these guys are experienced and more or less up to date on their knowledge of the science of pain.

Stay strong; you WILL find someone who can help, and give you the answers you need. But you will have to advocate for yourself all along the way.

Please keep in touch!

Sabrina 

I am a retired board certified pain management doc and I can see you are stuck with a doc who has already diagnosed you as an hysterical teen. I am hoping you have the ability with your insurance to switch your family doc/GP and that is your first step in the process that everyone here is telling you to do.  Most insurance companies will require the family doc to refer you to a pain doc and a neurologist, both of which you really need to see. You say you have nothing that can be seen, but seizures can be seen, even when you aren't having one by having an EEG.  You also need an MRI of your head, that too may show something.  In any case, given your young age, you have to be really careful to not come across as an hysterical young teen girl because that is how they will want to see you, which is so wrong.  Finding the right doc is hard enough for a condition that has gotten as far along as yours has, you need to make them understand how badly you have been affected in a calm and rational way.  It sucks to not be believed and I do feel for you. I tell you that we need more classes in med school on relating to patients, empathy, ethics, etc because some of those traits just don't come naturally to every person who got through the tough curriculum.  They come out book smart and people stupid.

Lynn

Hi Warrior99, I just found this site yesterday. Unbelievable amount of help here. I had to become more proactive, or die. So, I'm doing everything I can. Be assertive when necessary because we have a right to be on this planet just like everyone else. Never give up, M

Oh, Anne, Warrior and all:

If I only knew 4 months ago when this discussion started what I know now!!

Long story short, I ended up in the ER with a flare of my CRPS and central sensitization, 5 weeks after my last Ketamine IV infusion  (the insurance company got an IME from their "expert" and they decided to cut me off from the treatments I had been getting for the previous 6 months, no more than 4 weeks apart.

Because the ER staffers thought I was having a stroke, they did a CT and then an MRI with contrast. Both showed atrophy of my cerebrum and cerebellum (as well as a 6mm basilar tip aneurysm.

After I managed to control my crazy-high blood pressure with Dextromethorphan, follow-up CT-Angio showed the aneurysm is now only 3-5mm so now people at the local hospital are no longer looking at me like I'm a dead woman walking...

But here's the thing; instead of referring me for stuff like EEG and maybe fMRI or PET, and then maybe serum for antibodies and maybe even lumbar puncture depending on EEG result, etc.,I got referred by neuro to see LSCW, because neuro thought a lot of my strange in-office sensory exam findings HAD to be psychogenic, ie: "All in my head". It was a loooong wait to see the LSCW because I'm straight-up Medicare now, and the wheels turn slow for community services around here.

Fortunately, the LSCW DID believe me that any depression and anxiety I feel about my whole CRPS/SFN/CS situation is not gonna be resolved very effectively by talk therapy or anti-anxiety meds, because per the objective diagnostics, my fricken' brain is fricken' shrinking, people!!!

So in a couple weeks I have my first appointment with the psychiatrist, hopefully to get referrals for some of the objective testing modalities above.

If this new doc says to me: "So tell me...When did you first notice you had these feelings of brain atrophy? Was it during your toilet training??"

I will throw a couch cushion at him.

Sigh. Onwards and Upwards, people...Onwards and Upwards

Hi, Warrior, I can sympathise with your migraines, I've had them off and on all of my life, @50 years now.

I had an accident 14 months ago now which left me with crps in my foot. I trapped it between my bike and the central barrier at 70mph, had my big toe removed eventually after it had rotted and another one reconstructed and pinned, hasn't stopped hurting since!

A few months ago, despite all the painkillers I'm on for crps, I started getting migraines on average @ 1 1/2 a week on average. They were so bad I was hospitalised 3 times. My doctor put me on some beta blockers (propranolol), and I've been fine since, about 2 months now. Might be worth asking your doctor if that could be an option for you to try.

All the best mark

Forgot to mention, I'm also a diagnosed epileptic, (9 years ago since my first siezure). After a couple of anti epeleptic drugs, the one that controlled my siezures was Keppra(levitiracetam).

Another pretty good neuro drug I'm on is gabapentin, initially for neuro pain in my neck and shoulder, but now on max to cope with my foot.

It's a shame really that a lot of health professionals haven't got a clue about crps! I've only met ONE out of all the people I've seen over the last year who has had it and knew what it felt like.

Anyway, it won't hurt to ask your doc about the above, if he/she still won't listen, try getting a second opinion.

Good luck, mark

hi i have been suffering with CRPS/Complex Regional Pain Syndrome and Neuralgia for over 20 years. U may have some auto immune disorder . I believe u have hyperacusis/sensitivity to sound- which goes along with a immune disorder. i have hyperacusis and it is a b***h. if u haven't done so u need to see a neurologist or get a new one. Get into Pain Mgmt it saved me. Best of luck. Feel better.