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mvazquez1118 posted:

Hi everyone I am new to do this and was hoping I could get some tips on how to deal with the pain. I am 21 years old and have been suffering from unexplained medical issues and a lot of pain for over 3 years now. It all started with a diagnosis of a low thyroid and pretty much went downhill from there. I have a number of food, seasonal and year round allergies and it just seems like the issues never stop. I have been having severe body aches and pains as well as muscles pain for a long time and for some reason no doctor could tell me what was wrong. I went from doctor to doctor, blood test to blood test and everyone thought that I just needed sleep, exercise because it was only stress. I knew that what I was feeling was not normal. I was 18 and couldn't even go out on the weekends because I was in so much pain all the time. I knew it wasn't "just stress". Well without going to deep into my story I kept trying and trying until my doctor finally referred me to a sleep specialist who also specialized in critical care and other disease. Finally I found the person to help me. I have been seeing him for a few months now and after a number of blood tests that came positive for a number of disease he referred me to a colleague who specializes in autoimmune disease etc. (Rheumatologist) After careful deliberation of my case and all my symptoms he diagnosed me with fibromyalgia. I prove positive for other diseases but he thinks they are just positive tests because of the way my body reacts to the fibro and allergies. I have no symptoms of having anything else; heart, and other organs are looking good. I have a lot of bladder issues and GI as well and we are still trying to figure things out. I am seeing a urologist for the bladder issues and am taking Enablex 7.5mg.I am currently looking into seeing a gastroenterologist. I just want to know how some of you deal with this day to day pain. I am very young and it worries me to think about how my life will be in the future. The medications prescribed to deal with the pain have not gone well for me seeing as how I have a very low tolerance for drugs. I am currently trying Savella but have been taking only a quarter of the 12.5mg tablets at night (please don't even ask how, it is super hard to cut them into such small pieces) and I am also trying Tramdol 50mg but I also have to cut that because even the lowest dose is too strong for me. I am only taking those once a day so again the doses are still very low so they aren't really helping much. We are trying to build my tolerance because I am currently just having a lot of pain and have no treatment. Other meds have gotten me very sick. I live in New England so this harsh winter has not helped. It seems like the cold just makes everything worse. I am a junior in college that attends full time, and also have a part time job. With so much to do all the time it is just very hard and stressful to deal with all this pain. Can someone please help me?
Just to recap I take ….
Levothyroxine for thyroid
Zyrtec for allergies
Tramadol & Savella for the fibro
Enalex for bladder control (I also get a lot of pain in the pelvic/bladder area) and I don't know what else they'll put me on. I just want some advice please.
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crystalgreeneyes responded:
Sorry to hear of your situation. In one so young it is so disheartening. You found someone who was able to give you a diagnosis and that's a start. If you are very sensitive to drugs or even supplements, etc., I advise you to go to a compounding pharmacy. I went there recently to see if I could find out why Vit. D drops were making so sick. Apparently, the brand I was using has palm oil (the culprit) and the pharmacist suggested I try another brand after doing a simple test. He also told me that if I still had a reaction I could bring it back and he would continue to find one that won't have adverse effects.
I am not taking anything for pain because of the intolerance I have but I think if I work with this pharmacist and my dr., we may be able to devise a plan that works. I will post on my progress after seeing my dr. next week.
Take care. You need support so don't hesitate to find a counsellor or someone to assist you with all these issues. Sometimes we need an advocate because of the difficulty that can arise from trying to explain, to have the understanding of others, and simply to have someone to care.
 
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booch007 responded:
Good morning,

OK the hard part of this is done...you found a doctor that understands us...(if we can even say that). Next is getting the meds right. I also take Savella and only 12.5 tablet in the a.m. only......(It is potent to increase your norepinephrine(cousin to adrenaline) and I can't sleep if I take it again in the day or if i take 25mg dose.) We are sensitive to meds......always less is more.

Ultracet is my pain med. 37.5mg of tramadol with some tylenol mixed in there.....maybe this would be better.

My other med is a muscle relaxant and I have preferred soma, first only at night as it knocked me out and to help the 90 y/o woman I was in the morning....but now as I work hard and full time I use it 3 times a day. I found I couldn't get out of my car after running all day and sitting in the car home I would seize up...so that middle dose helped so much.

You are young so any immune dysfunction he has found on labs may NOT be seen organically yet, BUT NEED TO BE FOLLWED so stay with him. To have hypotyroidism at your age is telling me there are things to monitor in your future.

My past was an ICU nurse and I learned many things over the years, one is that we are given something to deal with....this is my thing..FM/CMP. I am hoping that you being out of sort with the queen organ (thyroid) that talks to all other organs in your body might get you better once you are on the thyroid a bit. Changing your body chemistry takes time to mend.

Please look to the right in the MEMBERS TOOLBOX under resources (see all button) and look for it. Posted under Caprice our old moderator for the board.

This has guidance from so many peple that struggle with this.

This is managable and like right now for me I am in great shape (for the shape I am in) We have ups and downs and just have to learn about you. LIFE is waiting for you and you can get there.

I am sorry I am not on so often for now as I am so busy with work. But my heart is always with the fmily here. We share a bond that no one can understand.

Hugs from me, Nancy B
 
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dollbug responded:
Hello mvazquez and welcome....MiMi in NC....I am sorry that you are dealing with so much right now....but there is hope and I am sure you will soon find something that will help you cope better....it does take a trial and error process to find the *just right combination of tools and tips* that might work for us FMers...we are all different and what works for one may or may not work for another. It is never the same for everyone....I think this is why doctors have such a hard time trying to help us FMers.

We, FMers, are a complicated group. I have learned that all medicines are *not equal*....so if you try one brand of whatever and find that it does not work....perhaps you need to check with the drug store and see if there is another *brand* that you can try. My daughter had this to happen to her....only because the place she normally gets her medicine could not fill her prescription for her and she had to go to another one....she was quite surprised at the difference she soon discovered. I also found out that vitamins and supplements are NOT the same either.

I think it is what they call the *fillers* in the medicines as well as the vitamins and supplements which might make a difference in how our bodies process them. So just keep this in mind.

I would also encourage you to be sure and ask your doctor to check your Vitamin D level....which is important to a lot of people these days. It is a simple blood test....but you MUST ASK the doctor to run it....since it is not a *NORMAL* thing that they check....IMPORTANT ISSUE though for the majority of the people....I think I read that about 85% of people checked have very low Vitamin D levels. Low Vitamin D can cause additional pain for some people and it has been reported that it can also affect other illnesses as well....(even some forms of cancer)

I hope you will also check out the info under *tips* and *resources* here....I am sure you will find some good *tools and tips* that perhaps you have not thought of trying. Be sure and also review the *member toolbox*.

Learning how to pace, pace and pace even more is important for me....keeping on some sort of schedule of sorts is also a must for me....(going to bed and getting up around the same time, eating about the same time each day, a couple of things to consider).

Eating right and drinking plenty of water every day is also important....(water is 98% of what I drink)....doing *gentle stretching and/or exercising is also good. Using a heating pad as needed and also using the STOPAIN spray (found at walmart) is a good thing to try on those places which will not ease up. Taking a hot shower at night right before bedtime using lavender bath salts so that your body can relax and you can sleep better. ( Good Sleep is so important to us FMers as well).

We live a vicious cycle....and little things CAN and DO make a big difference. Try to limit your stress as much as possible....Stress and the wrath of the dragon, aka FM are good friends....the depend upon one another to make our life miserable. Try to keep a *positive attitude*.

I tried different medicines in the beginning but did not find any which really worked for me without causing side effects....I finally learned to *control my FM pain* by taking vitamins and supplements and doing other things as well.

I now take the following: multi vitamin with extra D (source one from walmart is a good one for me)...Omegas, Fibro Response and/or Magnesium Malate...(I get source naturals from vitamin store and take only 1 each of these)...Super B complex and folic acid...(I think this helps with my sleep).

OK....this is a good start. Hang in here with us. You will learn from others. You will figure out what works for you.

I hope you will post often, ask questions, make comments and/or suggestions....IF you find something that works for you...let others know.

Take care and good luck.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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mvazquez1118 replied to booch007's response:
Thanks so much for the reply. Every little bit counts.
 
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mvazquez1118 replied to dollbug's response:
Thanks for the tips.
 
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mvazquez1118 replied to crystalgreeneyes's response:
Thanks you, I definitely need guidance from someone who has been in this for longer than me.


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