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Need help NOW (giving up)

Dec 14, 2014 11:33 AM

I have been in pain for nearly 1 1/2 years, after a car crash. I am in 9 out of 10 pain daily and i also get acute episodes (10/10 + muscle spasms). This pain scale is my pain scale, I have a very high pain tolerance so 10 for me is 100000000000000000.... For a normal person.

My pain is in my back, spine, lumbar, arms, hands, legs, feet and neck.

The Worst pain is in my Back (you can't touch it due to Allodynia and Hyperaesthesia etc.), neck (same thing), spine (the very worst area especially lumbar spine), lumbar region (2nd worst area)

I cannot take this anymore, I have no diagnosis they've just told me it isn't cancer, infection or inflammation. I need a diagnosis and i need the pain to go away. I need a break with little or no pain and then pain at like at 3 at most because I just can't take this physically of mentally anymore. I need help and son because otherwise I don't want to be here

Dec 14, 2014 11:42 AM

I'm on:
MST
Gabapentin
Melatonin (and i still can't sleep)
Fluoxetine
Topiramate

For acute episodes:
Diazepam
More Gabapentin

and none of it works! !!!!!

Dec 14, 2014 11:43 AM

Your complains are too general to give you any firm advise. You must see a neurologist or an orthopedist so they can order MRI/CT. Given your 1.5 yrs of pain, we can assume it will not get better w/o intervention from a doctor.

Dec 14, 2014 12:26 PM

Maybe fibromyalgia. I have it and I'm in constant pain!

Dec 14, 2014 1:11 PM

Reece, I had a car accident in July and my symptoms are almost identical with yours. I agree with Bradley in you needing MRIs and possibly CT scans. If you had some done when you had your accident, you need new ones to show progress or lack thereof. And you need to shop around until you find a doctor you're comfortable with. I had one telling me my problems were genetic and had little to do with my car accident. My pain management doctor just laughed and said my MRIs, X-rays AND symptoms were completely consistent with a frontal collision accident.

Don't give up! We're all in the same pain boat!

Dec 14, 2014 1:35 PM

@bradleycmc @Cspinelli @iathompson
I had an MRI and a contrast MRI 1 year ago ask they found was a undispapated central canal (co-insidental finding, I've either had it from birth or the accident but it isn't related).
My doctors aren't willing to try anything else.
I've seen a neurologist 1 year ago too and they found nothing notable to this.


Please help

Dec 14, 2014 1:38 PM

Also my pain diagram (person) is basically all red and dark red. Even though it's that severe should i use the other colours just to describe it better?

Dec 14, 2014 4:51 PM

Have you tried a rheumatologist? After low back pain for 20 years and all over pain for almost 10 0f those years I was diagnosed with fibromyalgia. I am on gabapentin, antidepressants, antianxiety and muscle relaxers for it. If you click on my pain picture you will see it hasn't helped much and I was one who had a high pain tolerance but fibromyalgia takes that from you.

Dec 14, 2014 5:28 PM

Hey Reece- don't give up. People have good ideas on here and you are not alone!

Dec 15, 2014 1:35 AM

You are not alone. Tracking your pain can be helpful if it goes up and down. I agree with all that say you need to keep on your PCM ( primary care manager ). If your Medical professional don't listen keep trying. That's what most of us do until we find a MD that will listen and run the tests. Insurance won't usually approve until it's effecting quality of life. Don't give up, you can find tools to help you manage the pain and help to diagnose it. I stopped trying for a cure for the pain, and decided to find pain management specialists and neuro specialists to help decrease my pain. I started going outside of the box of conventional medicine and tried acupuncture, massage, hydro, meditation and I'm not finish trying tools. Hang in there.

Dec 15, 2014 1:38 AM

@Shammagren I haven't been to a rheumatologist but have had an MRI and MRI with contrast.

@Jesswoo76 I'm finding it really hard note though Jess. I'm 15 and i don't remember not being in pain.

I need to look into fibro more but my pain is not just burning dip i don't think it fits. I need a diagnosis, my doctors can't seem to find one please help me.

Dec 15, 2014 4:18 AM

Reece, I can understand your pain and desperation to get rid of it. I am very sorry you are in such a state. Always be proactive in your care... Do research, write down questions and see a doctor. I know you went a year ago but got no results. Unfortunately, it doesn't sound like you're going to get better on your own. You can go to several kinds of doctors based on your health and lifestyle. Rheumatologists, naturopath, Orthopaedic Doctor and/or pain management. They may have you do gentle stretching, my recommend acupuncture/acupressure, therapeutic massage, deep tissue massage, myofascial release massage, physical therapy, trigger point massage/injections, stretching, walking, swimming or any number of other treatments. They may start you on meds that take down inflammation or nerve pain. If you're at a doctor and they run tests and seem uninterested and you get no answers, get your records from that doctor and find another one. I wish you much luck. I've been dealing with a pain level of 8.5 out of 10 for almost 20 years. Don't give up!!! Medical science has come a long way there must be something that can be done. This is a very good community and we are all here, in the same boar, ready to help. But, like I said, always look into how you can help yourself as well. Best of luck with finding a doctor .

Dec 15, 2014 7:07 AM

I am seeing doctors and because I'm autistic I research most of the day everyday. I have asked for hundreds of tests, treatments and medications over the 1.5 years but always received a no. I'm in the UK and in a low income family so can't afford a lot . On top of that because of things like Allodynia, Hyperaesthesia and many of my other symptoms nothing can go near my back so i can't do a lot I. e. Acupuncture (i know how good it is I had it before this) . I'm breaking down and have been through about 10 doctors I need help i need a plan and i need it now.

So far it's:
Ask about dual diagnoses (two conditions causing this) DONE today
Get referred to a Rheumatologist
......
.....
.....
...
..

The dots are where your suggestions will go. My appointment at Stanmore hospital (The Royal National Orthopaedic Hospital) is Wednesday (17th) that's 2 days away I need everything by then.

If they don't do something I dint really know if i can hold on

Dec 15, 2014 7:29 AM

Also I can't do much excercise as i can only walk 10 Meters and use a wheelchair at school etc.

Dec 15, 2014 9:36 AM

Reece, My cousin suffered injury from a major accident over 10 years ago and she has fibromyalgia. I also fibromyalgia following major surgery 4 years ago that is still causing problems. Because I have a huge list of medication allergies a doctor did a saliva test to check my ability to metabolize. They found I have a genetic defect and can't absorb B vitamins. I'm now under a neuropsychologist for dementia... Could all be related to B vitamin deficiency I have, and D vitamin deficiency. I'm not saying IRS a cure, but it gave me relief to know there's a logical cause for what's been going on with me for 5-7 years now. You are your best advocate. If doctors won't listen, get second or third opinions. That's what I did. I refused to accept the dismissive "in your head" attitudes and saw other doctors. I was skeptical of gene testing until I started researching it. Don't give up, fight for yourself, do some research, and trust God to direct you to the right, compassionate doctors who care.

Dec 15, 2014 10:17 AM

I've had 4 opinions already and might get a 5th. I'm agnostic (believe in an afterlife I. e. Heaven but i don't believe in God however I appreciate your guidance. The list is still really sorry I need more things and I just need this to happen quick. I don't care what you opinion is, please just post it from medication suggestions to diagnoses suggestions etc.


So far my list to do is:

-Get referred to a Rheumatologist
-Get checked for Fibromyalgia
- Get tested for genetic defects ( i don't really have any allergies though)
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Dec 15, 2014 10:43 AM

Reece, you may also want to have blood work to either confirm or rule out Lupus. Ask about biofeedback. I had some success with it in the beginning but then it wasn't helping so much. If I can think of anything else to ask the doctors, I'll be sure to post it.

Dec 15, 2014 10:52 AM

Reece, I also went through epidural steroid injections to block nerves and/or facet pain in 3 areas of my spine. It helped a good bit. If you've not tried it, talk to with a reputable pain clinic doctor.

Dec 15, 2014 11:43 AM

Reece; Sorry to hear you are in so much pain. Everyone has given you some excellent advice, which would be a good starting point. I know it's a hard, bumpy, narrow road, but don't give up. Take control! Keep searching and seeking anwsers. My pain is not as much as yours, but I'm just like you, very high pain tolerance, hitting 10 ' s majority of the day , just looking for a decrease in pain. I will keep you & everyone in my prayers.

Dec 15, 2014 11:50 AM

Thanks all. I asked about nerve blocks a long time ago they says no but I'll ask again and I will look into and maybe ask about biofeedback. Please keep thinking I only grey one appointment a month

Dec 15, 2014 11:56 AM

List so far:

- Get Referred to a Rheumatologist
- Get tested for Fibromyalgia
- Get tested for Genetic Defects
- research biofeedback
-ask about epidural steroids, nerve blocks and facet joint injections (the problem is due to my untouchable back they'd have to knock me out using general anaesthetic)
- Get bloodwork to rule out Lupus
- Get a saliva test for everything from metabolism to cortisol etc. (My free cortisol is fine though)
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Please keep going i need more please help and thank toy for all of it so far

Dec 16, 2014 10:56 AM

Phar help I've only got until 11 am tomorrow it's 4:55 now. Dies anyone have any other ideas anything. Meds, procedures, tests anything

Dec 25, 2014 2:59 AM

Have you tried a TENS machine? They use electrical impulses to block pain sensors. Especially good for muscle spasms. Mine keeps me sane!

Dec 25, 2014 6:51 AM

@Prickles Because of my Allodynia abs Hyperaesthesia I can't let anything touch my back due to pain but I had tried them in the past.
@Fibromighty Unfortunately in the UK marijuana is not legal. There is a marijuana derivative drug (containing THC etc.) But I also want to be a doctor in future meaning I can't have it when I am one.
As well as this I'm 15 so they don't give me as much meds, procedures etc. They do adults despite the fact that I can make my own medical decisions even up to chemo and surgery (gillick competence and fraiser competence).


I found something called kratom (mitragyna speciosa) but what type is best? Abs where is the best place to buy it for the UK?

Does anyone else have any other suggestions? I need them urgently!!

Dec 25, 2014 11:53 PM

Accupuncture for pain management. Chiropracter, Accupuncturist, some medical Drs. Hope you find SOMETHING!

Dec 26, 2014 5:30 PM

I dealt with and continue to deal with low back pain for over 20 years. The first 10 years were somewhat manageable with OTC meds. Around 2000 symptoms became worse enough to warrant professional attention. To make a long story short I was on several different medications but the only ones that gave any relief but not complete, were narcotic pain relievers. Because of the controversy with these meds, especially in Florida I now have a pain pump. Nothing has ever given me substantial relief but has taken the edge off. So my point is this. Just stick with it and keep trying to get a diagnosis. Any diagnosis would be a plus but proper treatment is something you need to strive for. It took me 8 years after seeking professional help until I found the mediocre relief I now get. I know what you are inferring to with "not wanting to be here". I have been there. Just hang on. You have a son do don't be selfish and do a selfish thing.

Dec 26, 2014 9:44 PM

Hey, don'tgive up! Your not alone, I've had crps for a year it sounds exactly like that!!!!

Dec 27, 2014 7:16 PM

@cblucus I don't have a son it was a typo I meant soon. I'm 15 ( i know it happens). Opiods (narcotics) seem to be the only thing that help me either but we haven't tried much because my doctor refuses to try anything else now. My Opiods don't even take the edge off. And you are right in what I'm referring to i have been suicidal before and Self - harmed a lot in the past and managed to stop but now I just can't

@becca2530 I'll all them but they refuse to even try

Dec 27, 2014 7:43 PM

Have you tried hypnosis, mindfulness meditation, or ASMR. When conventional western medicine is not helping time to go to some of the eastern type healing therapies. Don't rule out anything until you have a cause / diagnosis. Some of us here have had pain for more years than they are willing to admit, so we may have multiple causes. What we all have in common is we want the PAIN TO STOP.
Never give up. -- fjh --

Dec 27, 2014 9:01 PM

@fjhatch I haven't tried anything like that yet but plan on it as soon as possible but unfortunately I have both low funds and most people won't go near me due to my symptoms. I'm hoping to try hypnosis first, then mediation then mindfulness.

What is AS MR?

Dec 27, 2014 11:32 PM

Without promoting anything above something else ASMR is a type of relaxation exercise to calm the nervous system and relax pain receptors. I have no statistical data about its usefulness, but watched a news report about a YouTube user that went viral from just using whispering to create calming effect. Just type ASMR whisper in Google or on you tube. You should get a response

Dec 27, 2014 11:49 PM

By the way some techniques are free or can be low cost. Keep being resourceful.

Dec 28, 2014 8:29 AM

I know i constantly look for low cost treatment but it either doesn't work or they won't do it on me because of my complex situation. It appears if i want to try anything else after ASMR it will be pricey

Dec 28, 2014 2:33 PM

I know, I have considered research study, and experimental treatments. Although I realized I get what I allow when experimenting on MY Body. Small risks to get pain reliever is worth it.

Dec 29, 2014 12:48 PM

I have myself and have decided if I'm allowed to enter any after I've tried all this then I will even if it's risky I. E. Buphrenophine

Dec 29, 2014 1:51 PM

I had a bad rear end car collison in 1995. Along w/ a concussion. I was very fit but it took me to my knees. I took 30 days off. Saw a Physiatrist. Had gentle therapy, TENS, Massage, heat EVERY DAY!! Still have back pain but after treatment for unexpected kidney problems back pain was better ... heavy object hit the back of my seat at kidney level in the accident. I say this because sometimes we don't really know what all contributes to long lasting pain. I hope someone has explained myofascial pain syndrome to you. I have been managing different types of pain for years. The last thing I wanted to do was stretch. Gentle stretching (with your Drs' permission) lead me to short gentle walks & longer walks. I started Buddhist meditation which is amazing. You MUST HAVE a really good, well educated Orthopedist, Physiatrist & Rheumatologist. Someone told me about an "amazing" pain DR. But NOW I have gastroparesis - paralysis of my entire gastrointestinal system, because of indiscriminate use of strong pain meds. Careful use of pain medicine is often necessary. But physical therapy & occupational therapy has made great strides. Sometimes the "improvement" is a little painful. Make sure your DRS. have done every diagnostic test before they begin any rehab. Best wishes adjusting to the YOU in the now. A good Cognitive Therapist is one of the best supports you can have as you go through your pain journey.

Dec 29, 2014 3:33 PM

I've had many therapists only 1 really good one. My doctors haven't done many treats and won't do anymore and.... I'll continue this later I can't right now

Dec 30, 2014 7:00 AM

Search for my "STUPID STUPID STUPID DOCTORS" topic and it will give you insight

Dec 30, 2014 7:03 AM

Also look at my " Does anyone know any good doctors" topic

Jan 08, 2015 11:08 AM

Look up ketamine infusions. I don't know about it personally but am researching it myself for possible pain relief due to CRPS. Hope this helps

Jan 08, 2015 2:15 PM

I have, unfortunately my doctors (and most ) say no dye to the dangers. You can also go for cure with ketamine induced coma.

I'm so sick of this now

Jan 08, 2015 3:50 PM

Have they ever suggested a patch? I wear a 20mcg Butrans patch along with Hydromorphone tabs 4mg. I have also been recommended for something called Calmare treatments.

Jan 09, 2015 6:06 AM

Unfortunately they refuse to change my opiates (Morphine Sulphate Time Release Capsules). Before morphine I was on Fentanyl Transdermal Patches. Calmare is for chemotherapy induced neuropathy. They refuse to change any of my drugs

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