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New here; angry about the lack of treatment
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Elle1120 posted:
Hi all, I just need to vent. After several years of seemingly unrelated symptoms and then a year ad a half of chronic upper/middle back pain, I was diagnosed with FM. Unfortunately for me this when things really started to to go downhill. After the diagnosis, major med changes, and three more horrible visits to my PCP I was referred to a Rhuematologist. I have never met a doctor with so little compassion. I work full time but it's very difficult. It is ruining my personal life. I am a 35 yo mom of two, ages 7 and 10. They have to watch me come home from work miserable. I sit or lay down almost all evening. I don't want to get up to get their dinner, milk, snacks. My husband is burdened with these tasks as well as running them to sports, band, piano lessons and scours. I feel like a failure. All I do is sit in pain and wonder my doctors are letting me suffer. I know, it sounds like I am feeling sorry for myself. I feel bad for those of you reading this. But I am so frustrated I cannot get any pain relief and no help or therapies from any of my doctors. I spend the majority of my day (on bad pain days) wondering if I should go to the ER. But I talk myself out of it every time b/c I don't want to be labeled. I have gained 20 pounds on the nuerontin and that just makes me feel worse ohysicaly and mentally.

I am trying so hard to feel normal again.

Thanks or reading!

L
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Randm2220 responded:
L,

Welcome to the group! I have found friends here who will support me and rejoice in victories, just listen to me fuss and share my good and bad days. I am glad you found us.

I understand exactly where you are coming from. I was in the same spot just a few months ago. I too worked full time. I no longer work because of fibro. Thankfully I have a wonderful pcp who understands and a "nut doctor" who understands too. I see a therapist who also suffers from fibro. So on that front I am covered.

My former boss understood and tried to adjust to my fibro for several years but it got so bad he had to let me go. He hated seeing in pain all the time and the fog was too much for him. I was a dental assistant and just could not perform my job. It broke his heart to let me go. E are still great friends and he is happy that I feel better since not working.

I used to come home from work and hit the couch! I was asleep by 7. I had to get up a 430 am just to be able to work out the kinks, clear some fibro fog and excersise my mind just to be able to barely make it through the day. Thankfully, my kids are grown and out on their own. My DH (dear husband) would cook dinner and get all the house chores done for me.

I have not worked since the end of march and it has helped enormously. I am good for a few hours in the morning and get things done during that open window. I can rest in the early afternoon and then be a wife and spend time with my husband without the exhaustion. It is a tough financial road, but my husband is very supportive of it knowing that a few months down the road we will be ok. Thankfully he loves me being home more than he enjoys a bit of financial freedom.

My cocktail is still being worked on. It has been 3 years trying to get it worked out but I have come a long way.

I am currently enjoying a 3 week break from all things that worry me. Spending time with my in laws who dote and fuss over me and make sure that I don't over do it.

I know things will get better for you. I wanted you to know a bit abut what I went through and where I am now to give you encouragement. There it light at the end of tunnel.

Hugs!

Kim
 
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Elle1120 replied to Randm2220's response:
Thank you Kim - it is nice to know that I am not alone. I too have a hugely supportive family which helps tremendously. My mom also suffers from similar issues to mine so she understands what I am going through. The most frustrating part for me is the lack of healthcare options where I live. Almost all of the medical practices in the area - primary doctors and specialists - are owned by the hospital system. This means when I am referred to another doctor it's not about finding a good fit for me, it's about making sure the doctor is part of the "group". There are two doctors in the practice that I go to that are pretty awesome. But because of that I cannot get an appointment for a month. This really triggers my anxiety which is almost as bad as the pain on bad days. I just want to crawl into a hole because I can't turn my brain off! But I sit and worry when my symptoms are at their worst because I am almost afraid to go to the doctor or even call one of mine for help. I just feel there is still such stigma surrounding FM. I was on pain medication before being diagnosed - just 2 per day - and it helped a lot along with the anti-anxiety medicine. But now studies have shown these types of pain meds can make symptoms worse so I have to suffer through the constant changes in finding the right " cocktail" of meds.

How about actually listening to the patient and providing proper care?

Okay I am done venting, again, and thanks for listening!

I am feeling more positive today and will try to make it through without anymore negative thoughts.

L
 
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An_244127 replied to Elle1120's response:
Hi, I would also like to say that I understand what your going through and hope you can find some relief from a new doctor. I would like to ask you where you read this information that taking pain meds will make your symptoms worse? Did someone tell you that? I have never heard of that, pain meds have made my symptoms better, perhaps you could try them again if they gave you relief before. Take care.
 
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Elle1120 replied to An_244127's response:
Thank you. I too have found relief from these meds but both my PCP and Rhuematologist have said that new studies have shown the pain meds help temporarily but the pain feels or seems worse once the medicine wears off.

I am simply trying to live a normal life at 35 and they help me feel normal. I wish my doctor would understand that.

Thanks. Hope everyone reading has a good day!
 
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jennagale76 responded:
Hi L~
I feel your pain! Where I live is very backward- country doctors and not many choices. After over a year of being made to feel like I was insane (being told it was all in my head) or a drug seeker (one RA told me first thing when I went to him the first time, "we do not give meds to treat this") I too, was refferred to Dr's that were worhtless but part of my PCP's inner circle. I finally decided to seek a doctor in my hometown, which is near a large city, 2 1/2 hours away from where I live now. My family still lives in that area, so I could stay at my mom or sister's houses when I had appointments. I found the BEST Dr. for fibro, and I also found an awesome urologist for another chronic condition that I have. I make a trip every few months as needed, and am being treated properly and with respect.
It may be difficult for you to see a specialist in a different area, but it was an option that works for me and I thought I'd share what I've done. Good luck!
 
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Elle1120 replied to jennagale76's response:
Thanks so much Jennagale76- I am just south of Cincinnati (in N. KY) and am currently researching other doctors there. It's so hard but I have to advocate for myself. I cannot let this beat me and I won't stop until I find one that helps me feel normal again! I had a terrible pain dy today. I called my RA and they called back to tell me to increase the Gabapentin to 3x per day. Boy that stuff makes me feel lethargic. I hope I get used to it. As for the pain, it helps some. I guess it's better than nothing!

School shopping tomorrow for the kids then it's back to work full time. Our school starts the 22nd so my summer break is over!
 
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jennagale76 replied to Elle1120's response:
YW Elle~ I live near Marietta, on the river too~ ! I'm glad you have the option to find a Dr. elsewhere, I think all of these OH river Dr's are still stuck in the last century. lol
My kids are still in preschool, but don't start back until the end of Aug.
 
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booch007 responded:
Hey, First thing I wanted to say was NORMAL is a setting on a washing machine.....(jim told me that when I joined)

It is true. meet the new you. You will persevere as i read in a 3rd note of yours...I will fight this* Great to hear in your words. I have boxing gloves everyday on my hands, even when they are numb. Not one more crumb of me is allowed to change or be taken by the dragon.

I sense the backwoods medicine is not a fit, so TRAVEL. Get to the largest medical center in the area....I would go to NYC if the medical center by me didn't help me.

Get a fit with them there and then you can be followed locally later once the "med mix" and plan is in place.

The trial and error period of this disease can take so long though. I saw 9 physicians....and walked a bad line for some time as I built up tools to help myself and figured ME out.
I made lists of triggers and fixes...what helped what didn't. I knew it was going to be in my hands as much as any doctor I found.

Check in under Resources to the right, for the Members toolbox and go through the "game" we felt fit us best. try pieces of it to see how it helps.

I am so much better today then I was before my* education and this website is my home.......There is little that comes as a pearl of wisdom now (over 15 years) but I never cease to be amazed at how hard the early path is for our sad newbies.

We are open 24/7 and you just keep sharing. I have tried and bought so many things to be better...the best being that memory foam mattress to help sleep at night. MAGIC.

They should call it Magic mattress!

So, supplements in line, water in the mouth, good food on the table and the right doc with the mix of meds that covers you.

Remember too, WE ARE NEVER PAINFREE......it is turned down to a tolerable tone to have a life. A neurologist in the past told me, "Nan...short of anesthesia i don't think I can get this better......."

Wrong doc. And man if I heard over and over...LOSE WEIGHT ! Geez.........don't worry keep the gloves on and you will get that match, it is so validating and in saying that, relaxation of the spirit will help the pain as well. To know you are cared for and they will help you.

I had a girlfreind travel to the MAO clinic in Jacksonville Florida to get a diagnosis....she was there a few days and done! UP here the locals missed it all. So "gloves" persevere.....and maybe travel to get the help you need for now.

(((hugs from me))) Nancy B


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