Body wide pain for months, can’t take it any longer

Hi Tim, sorry to hear what you’re going through, I have horrific neuropathic pain to the point of desperation, but mine is in one place, my ribs, bottom left.  My diagnosis was CPSP, which is central pain following a small stroke.  It took years to get to that though, I had brain surgery, DBS which didn’t work twice.  I don’t think that is your problem, but can’t be certain.  MRI will be decisive and you may need lumbar puncture to eliminate MS.  I really feel for you mate, please let me know how it progresses, and hopefully you will soon have answers.

It sounds as if it might be Fibromyalgia to me, and some people are  bed ridden with it.

Google that and see if what you are eating might be causing it, and to get other suggestions. There are also several books written on the subject. Living with Fibromyalgia , by Christine Craggs-Hinton is one that comes to mind.

I have a certain  degree of Fibromyalgia, and have flare ups from time to time, and changing my diet somewhat does help.

Hope you get it sorted out.

Ruth

So sorry for what you're going through. 

?I think your best bet would be to have a MRI scan of the spine done. I had pains few months ago and was practically living on pain relief medication.  I  did all kinds of tests, e.g. blood, ultra sound, urine. Nothing was found until I did an MRI of my spine and discovered I had a bulging disc that was causing the pain. 

?I hope you get to the bottom of what's causing the pain. I wish you better. 

 

Hello again Tim,

I wrote earlier, and since then I looked in my books about Fibromyalgia.

I will give you a list of the  more common symptoms , and let you decide whether or not this might be your problem.

muscular pain                                            

​fatigue

disturbed sleep

depression

morning stiffness

anxiety

headaches

allergies

muscle spasms

dry eyes and mouth

restless arms and legs

irritable bladder

irritable bowel syndrome

numbness and tingling

skin problems

temperomandibular joint disfunction (jaw pain)

Other possible symptoms include:-

bloated feeling particularly in hands and feet)

photophobia ( extreem sensitivity to light)

chronic rhinitis ( a persistently runny nose )

bruxism ( teeth grinding during sleep)

mouth ulcers

bruising easily

Fatigue is one of the most prevalent symptoms, which you say is a big problem.

I do hope that you will be able to get some help, sadly the medical profession do not seem to have  an answer, although things may have improved. My chiropractor really made the diagnosis, but my GP also agreed and sent me to a rheumatologist. I was put on an antidepressant that I did not need which made me a lot worse. I then did my own research, and as i said earlier changed my diet , excluding things that are thought to  aggravate the situation.

Best wishes, and let me know how you get on.

Ruth

Hi, 

I’m sorry for what you’ve been going through. This sounds a lot like Lyme to me. You mentioned being tested for everything and I’m sure Lyme was included, but Lyme testing is super inaccurate. I’ve had health problems similar to yours for nearly ten years. It started with the shingles as the age of 12. I had been tested for Lyme multiple times and all were negative. However with every new health problem and weird symptoms that kept developing it kept pointing more and more to Lyme. I did extensive research on chronic Lyme and was convinced I had it. The only problem is most doctors will go by the negative test and tell you you don’t have it even if you give them the research. In order to have someone actually listen you have to see a Lyme specialist which are usually not covered by insurance. I’m not sure where you live, but if you’re anywhere near  CT the one I see is there an he isn’t too badly priced.

It may also help to see an acupuncturist for the pain. After the shingles I developed severe neck pain and couldn’t move my neck for years. After a million doctors, treatments, injections, and medication I finally tried acupuncture and it was the only thing to loosen it and relieve some of the pain. My acupuncturist also helped with some of my other Lyme symptoms and agreed with me that it was Lyme.

I hope this helps and you get an answer. I understand how difftand frustrating this is, but hang in there and try to take things one day at a time.  

I'll bet you are desperate with all of this going on with your body. I've had the worse 2 years of my life and it sucks but I'm 56 not 25. I hear from a lot of people your age that have problems with medical people that won't take their pain seriously. It can be so frustrating and it really breaks my heart when I hear stories like yours. And to blame it on anxiety just because he doesn't know what's wrong is just crap. Of course you are anxious, it's stressful to live day in/day out with pain. 

I'm not surprised that some people mentioned Fibro as a possibility and lime disease is another good suggestion. Unfortunately the tests for these conditions are either not very reliable or there is no actual test, so the doctor is forced to run tests to rule out other diseases until he/she can come to the conclusion that it must be ________. (fill in the blank) So I'm going to throw a couple of others out to you. Sjogren's Syndrome. If you google it, all you'll find is the two main symptoms of dry eyes and dry mouth. But it can also cause body aches and pains and fatigue. There is a blood test for it, but it is not very reliable so the best know test is to do a small biopsy on your lower lip and then have it analyzed by the lab.

My other suggestion is hypothyroidism (hashimoto's disease) or hyperthyroidism. It's a very simple blood test but it is not on the CBC test that the doctors always run. Check to see if you have had this blood test done. If you have hypothyroidism the solution is simply a daily pill.

One last thought...I went about 2 or so years with an elevated ESR and no explanation for it. I also accidentally discovered that I was running a low grade fever in the mornings. I never did find out why because I eventually got diagnosed with something called polymyalgia rheumatica which shows itself with an elevated ESR and an elevated CRP. Both of which indicate inflammation in the body. The only reason I don't think you have PMR is because you are too young.

I'm sorry this is so long. I hope you figure things out soon. Good luck!

Poor baby!!!! I came looking for possibilities, and found your post. There are soooo many people with undiagnosed pain, and soooo many doctors saying it is all in your head. Google, research, chat, post, until you find out what is going on. This is no way to live.