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Undiagnosed

Jul 20, 2016 12:03 AM

Hi friends- feeling frustrated right now. It used to be that I couldn't find out the cause of my pain- the root problem- but that's not the most frustrating anymore. The most frustrating is that I don't know if I'm on the right track to recovery. I don't know what to do to get better- if I did I would do it every fucking day. All the therapies I've tried have given me short term relief, nothing is lasting long enough- and that's the most frustrating. It's so discouraging

Jul 20, 2016 12:42 AM

I'm sorry @tinydancer
It's so hard and frustrating! I've been dealing with extreme chronic pain for over 40 years.
Maybe someone here will have concrete suggestions for you. I'm going to a pain clinic and after months still have freaking ridiculous pain. However, I haven't given up. The restrictions on prescribing meds that actually work are tight.i don't really understand government involvement that forces doctors to treat sick people like drug addicts but I'm hoping that the fourth month will improve.
Do you have any good medical care? I dearly hope so!

Jul 20, 2016 12:49 AM

Autoimmunes- I'm sorry- 40 years is a long time. I've been in pain 5 years and it feels like eternity. I feel like my life has been put on hold. I've been paying out of pocket for dry needle therapy. My insurance coverage isn't great- but hopefully I can get on my boyfriends plan/ since u quit my job and now will be working part time. I'm taking tramadol and it's not helping much... I don't want to take drugs

Jul 20, 2016 11:03 AM

Tinydancer I have a question and please don't take it the wrong way.
What if your diagnosis ends up being something that there is no help for? Something where the best you can hope for is temporary relief. I can only speak to fibromyalgia but it really looks like pain is something no doctor can help with.
Have you looked at changing your eating habits and maybe going to a naturopath? I only ask because nothing was helping me at all and I just wanted to die and I finally coughed up the money for a naturopath it if desperation and she did a little blood test which revealed food intolerances (which according to most doctors don't exist). When I removed the things that it showed on the test I felt like I got my life back. I want cured in any way but my pain became mostly managed, until getting chemically poisoned and now I've gained more intolerances that I have to narrow down. My intolerances (known ones anyway) include eggs, asparagus, sugars (honey and maple are the sweeteners i use if i need to), chemicals and additives, dairy, most cooking oils, caffeine, fructose - this one is hard because it means i need to limit my fruit to 1-2 servings a day, it's bc fruit season so I'm just going to deal with the increased pain and stomach issues. I have to limit acidic foods like tomatoes and salt. I have to limit nuts. It's overwhelming to start but once you find foods that bother you then you can choose of its worth eating it or not. And most things have some sort of substitute.
My boyfriend kept telling me i was full of shit when i told him to try taking some things out of his diet or at minimum reducing then greatly because his doctor said there is no scientific evidence of diet change helping with pain. He finally went to see a naturopath and she asked him to remove/limit all cereal grains for a month just to see. That was a year ago and he has felt so much better that he hasnt even tried to see which of them might be bothering him the most. He said that his body tells him right away if he has been bad and the effects last days. Like he stopped for a bagel for breakfast on Monday because he forgot to make his breakfast and was running late, yesterday he could barely walk. An elimination diet might be worth trying. Then you would know if you react to something or not.

Jul 20, 2016 12:12 PM

Tinydancer, I'm so sorry it's taking so long and it doesn't seem to be helping much. Gotobef has a good question and suggestion. Many of us never dreamed our pain wouldn't go away. And sometimes it takes a really long time for an injury to heal. Try to find another enjoyable activity to do while your body heals.

After my second neck surgery ('95), it took me over 2 years to build up the strength in my upper body again, and I've suffered spine pain & migraines since. When I quit work in 2010 I was lifting boxes filled with charts that weighed between 35-50 lb. I can barely lift a milk jug now because of more neck issues, for which I've got scheduled surgery coming up, and the doc says I'll never regain strength past 10 lb.

I wish my insurance would cover me seeing a naturopath, but it won't and I can't afford it myself. But I do believe food does make a difference. I've been on a reduced sugar diet since May's surgery, and when I occasionally eat something (usually not home) with higher sugar content I can tell a difference; I'm sluggish and more tired for 2-3 hours after eating it. And I think I've identified milk intolerance as a problem for me. I already have IBS-C, but when I have a milk product I blow up with gas and belching, along with severe sluggish & constipated bowels. I tried Lactaid for a week and there's definitely a difference. But I hate the sweet taste of sugar in the Lactaid.

As for meds I'm allergic to most pain meds. Tramadol is for my 7-8+ pain levels, otherwise I use OTC meds. Other rx pain meds are used for surgeries only. Try a naturopath if you can, and possibly a pain specialist to help get control of your pain. Maybe getting your pain under more tolerable control would help you heal faster. Hugs & prayers you can find the right methods to get your pain under control & hopefully someday it will be gone. 🙂💕🙏🌸

Jul 20, 2016 8:16 PM

Hi Tinydancer, I am going to try not to take drugs all the time either but i went to a naturopath too who ran blood tests and my body is super sensitive to sugar and stores it into fat which is why i havent been loosing weight. I am going to do an allergy test and try to eliminate those foods to see if i feel better, & add more protein to my diet to see if that helps. I am also going to go back to her to see if i can get a herbal mixture made up to help with sleep and stress. Good luck!

Jul 20, 2016 8:17 PM

I also forgot to say i need the protein because i have been having hypoglycemia episodes due to the sugar intolerence.

Jul 20, 2016 8:30 PM

Laalaa, my GI doc told me to increase my protein when I started the sugar decreased diet. I don't know if h hypoglycemia is why or not. I have had it in the past, so thanks for sharing that!

Jul 20, 2016 9:54 PM

The protein with each meal will keep you full and hopefully decrease the hypoglycemia episodes. They are scary as my sugars have been down to 3. I hope this works! I am slowley learning about this

Jul 21, 2016 9:23 PM

Thanks all. I will start looking for a naturopath- if there is nothing wrong with my back or spine..(from the MRI) it sounds like that might be a good way to go. I have an apt tomorrow to go over MRI results. If it's clear I guess I will get one done of my hip. Which I find rediculous they couldn't do both in one MRI.

It just doesn't make sense to me that my muscles keep spamming and tightening if nothing is structurally wrong with my body.

Thanks for the advice- I'm going to look up naturopath and pain special clinics now.

Jul 26, 2016 9:02 PM

Tha t is probably the worstv time in chronic illness.,. When you feel so awful and no one can tell you what's wrong or how to fix it! I hope you get some answers soon.
I went to a lot of doctors, genstics until I was told that they can't figure out what my underlying disorder is because it hasn't been discovered yet, and they will get back to me when it is. But me and my doctors aren't giving up. I think we have to just keep trying... and hope for things to get better.
Hugs!!!

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