All in my head?

Hi Tara, wow you really do have a lot going on in your life as far as different types of pain and symptoms. I learned a very long time ago, if I ever went to the dr with more than 2 problems going on at the same time nothing would happen. The dr would always say which one is the most severe of all and that is what he would listen to me about. The rest pretty much all got put by the way aside. This has happened with nearly every dr I have seen. I have had them tell me lets deal with one thing at a time.

I am no expert by any means, but I do wonder how much all of this is related to Fibro and CFS. Those two right there can cause so many different types of symptoms and problems. The bad part is finding a good dr willing to treat it. What medications have you been tried on for the Fibro? I know a lot of folks are put on nerve meds like Lyrica, Cymbalta, Neurotin with good results for the Fibro. Have you been tried on any of these? What about going to a pain mgt dr for a consult and see what one of them think they could do for you to help get some of this pain under control. Going to a PM dr would probably be my next step if this were me. If you could get a dr to agree most of what is going on with you is a result fo the Fibro & CFS syndrome, it may well be worth a shot to go see one.

I am quite sure because of your age and being so young most drs like your PCP and rheummy do not want to have you on much medication for pain because you are so young. They sort of frown on that and they say well if we start you now we will run out of things to give you as you get older. But, in the mean time you are seeing your quality life issues go down the drain and regardless of how old or young a person is, they are entitled to quality life. Pain does not have an age limit, nor does it discriminate. I would not give up and accept what the drs are telling me at this point. If nothing else I would try to get in at a teaching hospital and see what they think is going on. You still have some options here. I would have to stay at it till I got some better answers.

Anyway, I wanted to say hello and welcome to the chronic pain forum. Keep us posted.

Hi Tara and welcome to the the CP forum.

Straydog and Maggie have given you some excellent suggestions. I probably can't add too much except to reiterate the pain management thing. I know how hard it is to be taken seriously sometimes when you are younger, and there is no justification for it. Severe pain is severe pain.

I hope that you can find something soon to help.

Very best wishes.

Laura

Hi Tara, sorry to hear your in such pain and are not getting the help you need. My suggestion is to go to the top of the Chronic Pain Form and Click on Chronic Pain 101, there are several charts you can print out to graph your pain and what you was doing when it happened. There are several helpful tips there. Then I would bring it to a pain management dr. and share the info with him/her. I know for sure that depression goes hand in hand with chronic pain/illness it wouldn't hurt you to see a counselor or therapist, at the very least you will have someone you can talk to about all this pain. It doesn;t mean that it is ALL in your head, because it definately is not. But what can it hurt? Please keep us posted, I'll keep you in my thoughts for dx and possible a good resolution to it.
Cheryl

Straydog - thank you for the great advice. I've, too, learnt to keep things simple during a doctors visit. I just tell them shooting pains and chest pains. The only reason why I am confused by the fibro diagnosis is because both the rheumy and neurologist told me that I didn't have fibro, while the internist and my family doctor think that's what it is. Either way, none of them seemed willing to do anything for me. I've been put on flexeril, cybalta, and lyrica, all of which either made me so tired I couldn't function or violently sick. Apart from those medications, I've been told there's nothing else I can do.

Thanks to everyone else who responded. A pain doctor has never been mentioned and I don't even know if we have them here, but I'm going to look into it. I think I really do need a doctor who is sensitive to fibro issues.

Luckily I'm getting a grant from my school so I can go to physio. I was wondering if anyone with neurological pain had any success with a specific treatment plan?

I have diabetic nueropathy (nerve damage due to uncontrolled diabetes). I have had great luck with Cymbalta.

I know you said you tried it before, but you were not clear on why you stopped it, nor did you mention how long you were on it and at what dose or doses. The reason I am wondering about all of this is because Cymbalta is one of those meds that have to be started at the lowest possible dose (30mg once a day) and then slowly increased in 30 mg increments (no faster than every 4 weeks) until a theraputic dose is reached. It is also one of those meds that is cumulative in its effect, meaning the longer you are on it the better it works. It is not uncommon when starting to experience side effects ranging from feeling a bit dopey to nausea which usually go away in about 2 weeks. If started at a higher dose though these side effects can be very intense.

Lyrica is the same way, though the starting dose is 75mg, and I believe the dosing increase schedule is a bit different too.

Of course these medications do not work for everyone, and some people can not tolerate them. I am just bringing up the proper way they should be taken because there are a lot of doctors who do not understand or know the proper dosing of these meds.

As far as anti-anxiety meds and anti depressants many of them have been shown to have pain controlling properties, especially when it comes to nerve and/or non specific pain.

Hello and welcome to the cp forum, I also agree with Straydog, she is a long time sufferer and knows what she is talking about, I myself have among other things Fibro, I take 300 to 600 mg 3xday of Neurontin and I have found it most helpful.

Good luck, and take care,

Kathy/nini53

tara,

welcome aboard.

you have been given a good spectrum of answers so far, and some pretty good advice.

i believe you, don't let doctor's convince you that it's "in your head", you are the best judge of what hurts and doesn't hurt

there are some anti-anxiety meds, that for secondary uses other than their primary purposes, might help you with some
of the pain. i have been on tranzene for years to help with pain related to radiation damage.

good luck to you, hope you find some help soon, or at least find a doctor that can be more in tune to what ails you.

david in sc

Tara Welcome to our Chronic Pain family, I am curious as to what type of test you have had done, have they done an MRI of your spine or your brain? any nerve conduction studies? Have you went to any other doctors for a second oppinion? Have you considered going to a University medical school  and be checked out there? Or possibly going to Mayo clinic and have your self checked out? I get more than a little irritated when a doctor says it is ("in ones head") and should see a shrink! I think that is a cop out and your being blown off ! Unless they have done exhaustive clinical studies to rule out physical problems first, and then as a last resort want to check out your mental status, then it might be appropriate, but to often that is not the case. I would continue to search for answers,  it is to easy to blame stuff like this on mental problems such as being anxious and such, instead of trying to find out the real cause! 

 

If it sounds like I have a bit of an attitude about the way your being treated, I do! I have been there and I do not have allot of faith in most neurologist, and have fired quite a few!  Your symptoms do not sound so unusual, to me, and allot of the symptoms sound like problems with the nerves themselves, impingment of the nerve root? or possible something neurological, have they done any studies for MS? You mentioned brain fog? and you have RLS?  do you snore? do you have problems with night sweats, or waking up allot during the night? have they ever done a sleep study on you to check you for sleep apnea? I am no professional or anything, but common sense just tells me that because of the stuff  you have described that there are allot of things other than ("in your head") that  could be causing these things! 

 

As I have said I have been there, I have had a few  neurologist just out right lie to me and blew me off, and I called them on it!  And I got to the bottom of some of my problems and got them fixes, I have had two major fusions done on my neck since 2009, and they fixed my problems I was having!  If I would have listened to my neurologist I would still be in pain! So please keep pressing  for answers, and change doctors if needed, but seek out solutions, and relief to your symptoms.  

 

I do wish you all the best, and keep us informed on how things go for you!

 

Good luck to you

 

White Beard

Take heart, Tara, It sounds like you, at the very least, have a vitamin deficiency. A lack of B vitamins and magnesium can cause tingling, B12 , zinc a loss of taste I would spend the next two months trying supplements to correct before reconsidering more serious medications.. (bravo for quitting, these meds have serious side effects and at 21, would have likely given you problems later in life...they have helped others but it's a trade off with the other problems they cause in the long term like diabetes, liver dysfunction, blood pressure, etc) You can email me for suggested vitamins. Get your doc to test B12 and D in your blood, and review this site for other symptoms.http://www.health-science-spirit.com/deficiency.html

Some docs are quick to diagnose, some make sure they've done the necessary blood work to rule out other causes. This site shows what to ask http://www.cfstreatment.info/quick_start_guide_for_practition.htm. Some have had a dramatic improvement on VitD alone. (3000-5000 iu a day)!

If boosting with supplements doesn't help, then I would focus on CFS treatments, these sites have helped me
http://www.drmyhill.co.uk/
http://drlapp.com/
http://helpingfibromyalgia.com/2011/sleep-problems-fibromyalgia/
http://foresttennant.com
http://www.treatmentcenterforcfs.com/ (if considering anti-viral)
http://www.theroadback.org/ (highlights what vit deficiencies result from meds)

best of luck and stay strong, with help and perseverance, life will get better, Laura


"There are many possible causes taste loss – some more easily treated than others. One of the more easily treated causes are vitamin and mineral deficiencies. Vitamin B and zinc seem to be particularly implicated in taste loss.

Some experts believe that as many as 40% of otherwise healthy men and women have a B12 deficiency and are not aware of it. B12 is an essential vitamin that helps develop red blood cells, preventing anemia. It also helps ensure nerve health.

B12 is found in meat, milk, cheese, ice cream, fish, eggs, and poultry. As we age, the body is less able to absorb this important vitamin, so it uses up its reserves which can result in anemia and other health problems.

Symptoms of anemia include: weakness, fatigue, lightheadedness, pale skin color, diarrhea or constipation, bleeding gums, a sore, red tongue, rapid heartbeat (or chest pain), shortness of breath upon exertion and taste loss.

If the deficiency has caused damage to the brain and nerve cells, these symptoms may be evident: numbness or tingling in fingers and toes, forgetfulness, confusion, depression, poor balance and coordination, difficulty thinking and concentrating, ringing in the ears (tinnitus), impaired judgment or impulse control (personality changes), difficulty sensing vibration and dementia.

A simple blood test can check for anemia. Fortunately, B12 deficiency is easy to treat. Supplements are widely available from any pharmacy without a prescription. However, oral supplements are not the first line of treatment. More often a physician will prescribe a B12 shot because it gets into your system much more quickly and in a much larger dose. After these initial shots, you will need to continue to take a B12 oral supplement for the rest of your life to prevent the return of the symptoms of this deficiency.

Taste loss from a B12 deficiency can take over three months to return after treatments begin. In most cases of mild deficiency it will return to normal. "

It's been a while since I've replied, but I wanted to thank everyone else who has posted.

Chartreau - thank you for the advice. I actually found out I had a severe vitimin D defficiency, and since I've been taking suppliments my fatigue has radically improved, and I don't get muscle pain or weakness anymore. Since I'm vegan, I've always been taking B12 and a bunch of other stuff daily, which I feel like has been helping a lot, mostly with my energy levels. I've had so much blood work done for other stuff and everything is normal.

Jim - thank you for the suggestions. I have tried both cymbalta and lyrica and could not handle either. I was vomiting and shaking for days, miss almost two weeks of school, cannot do either again. I'm going to ask for anti-depressants next time i see my family doctor. It's great that those medications are working for you.

White beard - I have had tones of blood tests (everything normal), a chest scan (also normal), and a brain MRI (clean) and I'm waiting for the results of a sleep study. Pretty much everything has been ruled out. I'm really glad that you have found relief, I really hope that I can find the same one day.

CRPS