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New here but not new to FM
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AMSDutchess posted:
Hello all. Hope you are all well tonight. I am new here in this forum, but not new to Web MD or FM. Diagnosed about 15 years ago, am now 40. I have always had the "what on earth is fibro? If I don't understand it, and you can't explain it, then I don't have it." attitude. However, over the last 10 years, and multiple doctors, Rheumatologist, Neurologist, Family, Pain Specialist, I guess I do have it. But I still don't understand. I am what they call a Type A personality I guess, I make a list, and I'm usually at the bottom. Meaning, I am a single divorced Mom just trying to survive. So at the end of the day, I usually haven't had time for myself. In the last few months, I have become very ill. And recently, I have started having changes in my symptoms. I was diagnosed with Pleurisy in Feb or March. Now I have constant Rib pain. I see a chiro for Arthritis in my upper spine and neck. I also see a Gastro doc for Crohns , diverticulitis, colitis, ulcer etc... I won't go on. I keep going and going, I work full time from home for a company for 6 years now, but that is hardly manageable these days. Now, I have all these new things, that aren't manageable. I have random sharp stabbing pain that brings me to tears, and to my knees. It strikes and goes, and comes back and goes. Never in the same place. I feel like I am being stabbed. Pain specialist increased my Gabapentin from 200 mg a day to 900, but I am increasing slowly to get to that level. Right now am a week in at 300 mg a day. I need help. My drs who I have now been seeing for years, don't hear me, they pacify me, and just want me out of their office. At least that's how I feel. I don't take narcotics, and don't like to even take what they have given me, and usually take alot of tylenol, soak in lavender daily. I don't like pills period. I don't drink. I try to do my best to manage. But every time I see a dr, they treat me like I'm a drug addict, and they tell me, you have a chronic pain condition and you need to deal with it. So I leave their office frustrated and feeling helpless. Theres so much more to say, but will leave it at that. I am so open to try anything at this point. I have 3 girls, and 3 grandchildren. My youngest is still home with me and she's 11. She needs me, and I need to be better. For me and for her. So any help and feedback is appreciated. Thank you for listening.
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dollbug responded:
Hello AMSDutchness and welcome. MiMi in NC...sorry you are having to deal with so much right now. The wrath of the dragon is indeed a very mean and ugly illness. I am sure though that you can find something that will work for you....but it does take time and effort. Most of us FMers are or have been people with Type A personalities....we never say NO and we keep going and going....just like the bunny....You, my friend, will have to learn how to pace, pace and pace even more. You will also have to learn that your life is going to be quite different from what you are use to, if you want to have less pain. Pushing yourself to the limit is NOT a good thing and you will continue to get worse unless you decide to slow down.

I would encourage you to find a doctor who treats FM and knows how to help you cope better. FM is an illness and there are still doctors who have no clue what to do with FMers...call around and see if you can find a doctor who can understand what you are dealing with.

I would then encourage you to be sure and ask the doctor to check your Vitamin D level as well as your Vitamin B levels...this is really important for a lot of people these days. Low Vitamin D can cause additional pain and it can also affect other illnesses as well. Do your own research on this to see just how important it is.

Taking care of yourself is a must...so that you can take care of your youngest child. There are all kinds of good things that you can try. Check out the info here under *tips* and *resources*...you should remember though that what works for one may or may not work for you. We are all different and you have to figure out what the best *tools* are for you.

We, FMers, do understand exactly how you feel....most of us have been there, done that. I am one of the FMers here who has learned how to *control my FM pain* by taking vitamins and supplements...I tried different medicines in the beginning but did not find any which really helped me without causing side effects.

FM is indeed a chronic condition and we have to figure out how to cope with it and ease our pain.

You have found a good support group here. We have some good people who care and share what they have found that has helped them cope better. Everything is a process though. It does take time.

Take care and good luck.


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

 
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missist responded:
Hi AMS Duchess!
Welcome. I'm one of the 'newish' people here, been coming maybe a month or more? (sorry my memory has fibro too)

Always interesting how many people with fibro have spine problems-- what comes first the chicken or the egg? I guess it doesn't matter, result is pain.

I am using gabapentin--had some problems with it at first but I stopped and realized it has been helping. I also take celebrex 2 x a day-- 3 would probably be better as my pain & stiffness (my #1 problem these days is stiffness) Starts back up early in the afternoon- 1 or 2 usually--and I don't have another pill for about 5 or 6 hours.

I'm sure we've all had a bad time with doctors. Doctors like to see a problem and fix it--and we're very fixable--so far.

There's more research going on and some hopeful news lately--so maybe some day a solution will come?

I hate to say it--but I also don't like pills--but to feel reasonably functional--you probably have to take more.

I never really got relief from tylenol-- I was taking 2 aleeve 2x a day when my dr RXd the celebrex--it worked fast for me-- not everyone benefits from an NSAID but if you have spine problems--you may need to take the gabapentin AND and NSAID, and probably an anti depressant too--which some of them actually do have an effect on pain. I don't take cymbalta--cuz I don't want new drugs if I can avoid it--they are terribly spendy and you don't know for sure what side effects may come in later on. I do take the celebrex--which is newer--but that's desperation.

I take nortryptiline-- amitriptiline also works for pain.

A 3 prong approach to pain--means you can take relatively low doses of all 3 drugs rather than huge amounts of one. Although I think I could use a little increase--I hope not to need narcotics or anything for a long time--I hope. I also take some vitamins-- D & magnesium-- although I know D does help--I am not seeing much new with the magnesium. I also cannot remember who told me to take it.

The memory problems are such a pain too.

There are better doctors--sometimes you just need to switch--although I think for me-- part of my problem is how I talk to the doctors. I feel I need to be more bold and press for answers more. Also speak up-- I did last time I was in a dr wanted to up my nortryptiline and I pointed out that I am on 4 different meds at bedtime--3 of which cause sleepiness and I wasn't keen on adding more to the coctail. They should listen if you say something--if not sometimes you need to be more assertive or change doctors.

Pain is an exhausting thing. My current Dr says it MUST be treated that it just causes more trouble if you don't deal with it. So that's encouraging to me--that he does see it as a thing that must be treated. He hasn't yet told me that I just need to lose weight or exercise-- thank God cuz I think I would scream-- that is not the cause of this. LOL. My last dr was a fitness nut an she weighed about 10 pounds, I tried what she suggested for exercise and ended up in worse pain--which was a year ago and has not let up.

Well anyhow-- welcome! I'm sure others will chime in.
Mary
 
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Alisabusybee responded:
I totally understand how you feel. I have been sent from doctor to doctor having my meds increased & decreased constantly. I have also been subjected to a drug test by the pain mgmt spec to ensure I'm not some drug hungry patient looking for narcs. Meanwhile I'm in extreme pain. I have chronnic back pain with arthritis in my back and fibro causing pain all over my body. I go through the fatigue thing and fog also. I have been home from work since April and I am at my wits end. I just pray and rest and take the meds. I try to do stretches when the pain isn't extreme & take hot showers for my back. I use ice pads, heating pads, massgae chair you name it. I just pray for us all that we will be set free from all this agony and pain.
 
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booch007 responded:
Good morning AMS,

When you leave the office frustrated and sigh....they turn to the desk area and with your chart and they "sigh" and say, what am I going to do with her? How can I help her?.
I used to be so angry at the 9 doctors I saw before my Physician Champion.....before I learned about me and what this is and what I can do for me to be the best I can be in tis mess. We are all different and the mix of fix is different, so frustrating for MD and PT. .

My neurologist was showing me in her book why I felt like I did, why I had my symptomes. I went home and bought her medical book.....then I joined here and took all the help I could from the fmily. The humor here was the most uplifting, seeing it will get better. This is the biggest challenge I have ever faced, but I face it with grace and fortitude....

My bible book too is " FM and Chronic Myofascial Pain" a suvival manual by, Dr Devin Starlanyl. I got it on amazon. It is priceless for me to know where the cause of my issue is and fix for that part of my muscles. Heat, massage and my meds get me to an 8-10 hour wellness window that affords me a full time job and distraction from all of this. Distraction and humor being very powerful meds.

In my beginning I used chiropractic but there was a turning point where I returned to Neurology to care for me, this is where I stay. I use trigger point injections help me survive, every 2 weeks I am there to be reset and have the muscle relax and reset. It is aggressive therapy and it is for LIFE. But I am able to be high functioning and alot of my early syptoms are gone.

Please look to the right and in resources look for the MEMBERS TOOLBOX. The look under Dr Pellegrino and read all his posts, I have made a file of them to return to and use for guidance in my future. Like an article he wrote on working at a desk and how to make that work, as for the last months I have been on a computer project that is extensive, but I used his tricks and I am fairing very well.

So, welcome and hoping that we can tune you up a bit to be better. memory foam mattress? That was the first pearl I got here. My sleeping was awful and no one suggested this in the Dr dept...but the girls brought it up and IT made all the difference.....

I wish you well, stay and post and hope we can give you the support you nedd. Nancy B
 
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Bette_K responded:
Dutchess,

None of us WANT to take drugs, but most of us HAVE to take drugs at least some of the time. The thing is, if you don't take the prescribed dosage of a drug and don't take it for about 6 weeks, you won't know if it is going to work for you.

We have all had drugs we just couldn't take. Sometimes we found out with the first pill. Sometimes it took a higher dose or a longer time to experience intolerable side effects. Naturally, you will not take those drugs again.

Do not be surprised if you wind up with a final dosage of 1800 mg. of gabapentin each day. That seems to be the normal full dosage. Once you have been at that dose for 4-6 weeks, you will know whether this medication is working for you.

I agree with Nancy about finding another doctor. See if you can find a neurologist who manages fibromyalgia in your area. Most of these specialists in the nervous system are well aware of all the problems you are dealing with. They know all about the things that can go wrong when your nerve fibers only want to register pain. I miss my friendly neuro immensely.

We have a lot of knowledge here. I hope you find the help and support you need.
Bette


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