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Related: Culture Forums, Support ForumsLiving in Chronic Pain and Seeking Advice
For over three years I have been suffering from chronic pain. My body is sensitive to touch and pressure (allodynia) to the point where a wrinkle in the sheet under me or a seam in a shirt can cause me pain. My muscles and joints are always sore. My sleeping has also suffered immensely and my once solid concentration and memory wavers. My body has become both a prison and a torture chamber.
Over the past year and a half I have sought medical help. I have seen dozens of specialists and been tested for so many illnesses I have lost count. After all of this my doctors have given me a diagnosis that annoys me greatly - that of Fibromyalgia, which is a diagnosis of exclusion. A diagnosis of Fibromyalgia is simply another way to say they have no idea what is going on with me or how to solve it, which their incessant tests and ineffective treatments simply reinforce.
At this point I don't know what to do with myself and my frustration is building to a dangerous point. My health is so bad I have been unable to hold a job for long without going out on medical leave again and this only adds to the stress I am under. I am reaching out to the DU community to seek advice and hear if anyone in our community has received a similar diagnosis to learn how they handled it.
Thanks for your time and help.
LaurenG
(24,841 posts)There are other non narcotic meds that can also help. You have to seek a solution. Keep pushing your doctor to help you and try not to get too stressed it makes pain worse. I am sorry that this has happened to you. Pain is hard to manage but it can be done.
EEO
(1,620 posts)They cancel you right away then you have to wait at least 15 days for the new one to send you everything you need. Once that is settled I will be pushing my doctors for answers again.
LaurenG
(24,841 posts)Last edited Sun May 18, 2014, 07:11 PM - Edit history (1)
most really don't get it. I had a flare up last night that I thought would do me in. I get it, and hopefully you'll get some relief very soon.
mcar
(42,210 posts)I know a few people with fibromyalgia and it is a very difficult condition.
My son was diagnosed with chronic fatigue syndrome several years ago while he was in college. I won't go into detail about the number of doctors, tests, and the cost. It's taken time but he's learned to live with his condition.
Two thoughts: Find support and information online. He and I researched the heck out of it. Knowledge is a tool. Second, seek out a doctor or doctors who accept fibromyalgia as a diagnosis. We wasted years and thousands of dollars on doctors who refused to see my son's myriad symptoms as all pointing to one thing. They insisted he had to have several different problems (that all came on at once, how odd ) and refused to even consider anything else. We saw every specialist under the sun until we sought out a chronic fatigue specialist.
Today my son is 27, gainfully employed and lives a happy life. He knows his limits but with the help of an internist and an allergist, both of whom respect the CF diagnosis, he's doing great.
It took time but it did happen. I hope you can find the same.
EEO
(1,620 posts)And an allergist is on my list of specialists to go to next.
riderinthestorm
(23,272 posts)She got the diagnosis from the Mayo clinic so I don't think its some kind of bullshit diagnosis... that said she's found great relief with medical marijuana, a vegan diet, a strict adherence to getting enough rest, and meditation.
She fought the diagnosis for a long time (she's in college and wants to party and eat hamburgers and junk food etc) but the overwhelming pain finally forced her to get tough. 2 years later and she's in a much better place pain wise. As you know its not going to ever go away but she has finally got her life back under control. She says its a disease of inflammation so the key for her was tackling that systemic inflammation with that combo of mj, diet, stress reduction, and adequate time daily for her body to rest.
I am so sorry you're suffering. ...
EEO
(1,620 posts)And have recently changed my diet in an attempt to help my symptoms. My PCP will not prescribe medical marijuana to me (but is more than happy to fill me to the brim with pharmaceuticals that don't work) so I am looking for another one.
elfin
(6,262 posts)especially in the mornings. No insurance. Figured bad arthritis and was procrastinating going to a doc.
One day on NPR she heard a program on fibro and how going gluten free can help some sufferers. She did it and after 3 weeks, her pain was markedly reduced and after 6 weeks it was about 75% reduced and now almost "normal" for the usual aches and pains for her age. Over 60.
She also went organic. Good luck.
EEO
(1,620 posts)I just recently started cutting gluten out of my diet.
NightWatcher
(39,343 posts)Many of us over there deal with chronic pain and other related conditions. It's a friendly place.
EEO
(1,620 posts)Thanks.
vanlassie
(5,637 posts)has become a serious problem. Well worth the effort to get it out of your system. Then get rid of all processed foods. Have no high fructose corn syrup. Grass fed meats if you eat meat. And grass fed dairy. This should be tried even though it's a big set of changes. Many many people are not able to tolerate the SAD ( standard American diet) anymore. God knows it's probably killing us all slowly.
EEO
(1,620 posts)You are not what you eat. You are what you eat eats.
vanlassie
(5,637 posts)mucifer
(23,374 posts)EEO
(1,620 posts)mucifer
(23,374 posts)I have no advice, but I hope you start feeling better soon.
undeterred
(34,658 posts)There are clinics within some major medical centers that specialize in helping patients manage chronic pain. I think they see people who have tried everything to no avail. They may be able to help you manage the pain better than you are now.
Pain Clinics Overview
What Does a Pain Clinic Do?
Although pain clinics differ in their focus and offerings, most involve a team of health care providers that can help you with a variety of strategies to manage your pain.
These health care providers are likely to include doctors of different specialties as well as non-physician providers specializing in the diagnosis and management of chronic pain. These providers may include psychologists, physical therapists, and complementary and alternative therapists such as acupuncturists or massage therapists. Together, they will put together a pain management plan for you.
http://www.webmd.com/pain-management/guide/pain-clinics-overview
hedgehog
(36,286 posts)(that said, another daughter's response was "meh" )
There are several different medications out now for fibro, some work for some people, some work for others. I'd find a doctor willing to work with you to find what does work for you.
An added consideration is that the inflammation process tends to boost those chemicals which raise your level of anxiety and depression.. This is not saying "it's all in your head". It's saying that the same thing which is causing you pain may also be causing anxiety and depression. Getting poor sleep because of pain doesn't help, either. It's be worth determining if this is part of the problem. If so, you might get some benefit from talking therapy, meditation, exercise, prescription or some combo of these.
BTW - I would run away from anyone suggesting any kind of opiate. I could be wrong, but my understanding is that opiates don't help this kind of pain. In any case, you need something for the long run.
EEO
(1,620 posts)But I will definitely look into it.
Avalux
(35,015 posts)Meditation - learning to focus on and control your breath will help in calming your nervous system; it takes practice but after 30 days you should notice a difference. It will also help with how you PERCEIVE your pain allowing you to deal with it better mentally.
Diet - pay attention to what you're eating and then try to cut out the processed foods; eat as fresh as possible. Gluten may be an issue as others have pointed out, wouldn't hurt to give that up just to see what happens.
Exercise - gentle restorative stretching may be a good option. It's a type of yoga and is effective in relieving stiffness/pain.
I am sorry you are in so much pain that's it's affecting your daily living and your thinking. My mother has fibromyalgia and these things have worked for her. She takes ibuprofen on a bad day but nothing else. We don't know the mechanism of action of antidepressants recommended to relieve this type of pain and taking them long-term may not be wise knowing this. I am not telling you to not take pharmaceuticals; but if you haven't tried these other things, worth a shot.
Good luck and I hope you find something that relieves your pain so you can regain a sense of well-being and enjoy life again.
Sweet Freedom
(3,995 posts)next time you go to the doctor. I always go with my mom and have found two heads are always better than one. (I always think of questions she doesn't and I also corroborate her and pressure medical staff for her as necessary.)
Good luck to you!
EEO
(1,620 posts)shenmue
(38,503 posts)PasadenaTrudy
(3,998 posts)helped greatly with Cymbalta for fibro. pain. It is the only thing that has helped. I tried the diet stuff, no gluten, etc. Didn't help at all. Also Nuerontin is great for pain in some people. Good luck!!
EEO
(1,620 posts)I discontinued it. I tried and discontinued Neurontin because it did not work.
Lucinda
(31,170 posts)Nutiva Hemp Oil - massaged over painful areas can bring enormous pain relief and lasts for quite a while. I take it internally too. Read the Amazon reviews above if you are interested...
I also use Turmeric with black pepper - and raw Honey & Cinnamon. Both of those combinations also help tremendously.
If you have a Vitamin D deficency it can also cause painful joints and muscles.
EEO
(1,620 posts)We tested for vitamin d deficiency. No dice.
Lucinda
(31,170 posts)The hemp seed oil is sooooo helpful for me. Hope these help you find some relief!
KT2000
(20,544 posts)it is a brain problem - over-active response.
It is possible that you are being affected by chemicals in your environment - pesticides, herbicides, formaldehyde, fragrances, etc.
Here is a link to a test to determine if that is the case.
Good luck to you
http://www.qeesi.org/
SleeplessinSoCal
(8,998 posts)Prednisone has worked very well for a friend in a similar situation.
hunter
(38,264 posts)Honestly, when I take it, for a few days I'm like, wow, this is what "normal" must feel like. Then I get a little manic, then I get a little psychotic...
I'd choose it over any opiate.
But steroids of all sorts have wicked side effects, worse than opiates, especially for me. My worst crash-and-burn ever was caused by oral steroids I was prescribed for severe asthma.
I'm responding to this thread because I've got some family experience with chronic pain issues. My own are not a big deal, except now I've tinnitus, probably from NSAID use. My current cycle is NSAIDs until my stomach hurts, and then I back off them for quite some time and try something else.
I hate opiates, not because I'm worried about addiction or anything, they just make me feel blechhhh in a way that's hard to describe. I'd never take them for fun. They do work for pain.
One of my siblings has a diagnosis of Fibromyalgia. An old long generic drug has worked well but I'm not here to suggest meds.
My only recommendation is to find a doctor who will listen, and who will not dismiss frustrating medical problems like this.
"Tough it out" or "I'm scared of the DEA," or "I don't like difficult problems" or "assembly line by the book..." these sorts of doctors are worthless in situations like this.
one_voice
(20,043 posts)Have you seen a neurologist?
Your description sounds a lot like RSD/CRPS
http://www.medicinenet.com/reflex_sympathetic_dystrophy_syndrome/article.htm
http://www.webmd.com/brain/reflex-sympathetic-dystrophy-syndrome
http://www.rsds.org/2/what_is_rsd_crps/
http://www.rsds.org/index2.html
I would find a doctor in your area that is familiar with this and see them.
Good luck to you.
edited to add http://www.forgrace.org/women/in/pain/C5/
panader0
(25,816 posts)Seriously, as an ex-surfer (I now live inland), I say the ocean is very therapeutic. The muscular flow, the salt water, the exercise all do wonders for the body. If not surf, go to a warm (think Costa Rica or South Seas) ocean and float in the water. It will help anything.
I stay away from doctors--haven't been to one in 30 years, and that was for stitches. I think doctors prescribe whatever Big Pharm tells 'em to.
nenagh
(1,925 posts)If you have seen many specialists... they must have discussed it with you...
I just had to ask because skin sensitivity is mentioned as a symptom of chronic Lyme disease by WebMB...together with joint pain etc..
and the bulls eye rash does not always occur before Lyme disease.. although it was certainly mentioned when I was bitten by a tick in my own back yard as a near certainty as a symptom of early Lyme disease.
Please forgive me for suggesting anything over the internet...
But when I read about skin sensitivity and other symptoms, I thought I would mention it to you..
Best of luck, EEO...
EEO
(1,620 posts)and just about every doctor thinks it isn't. They tested, but I am told the test isn't very accurate. It is all very frustrating.