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Feeling forgotten


#1

Hi everyone, I’m feeling so down today. I am so frustrated with doctorsthat i feel like I’m going out of my mind! I had arthroscopic knee surgery on July 13th. For about a month before that I was in a Major flare. I tried making an appointment with my primary care doctor but of course she was not in the office and would not be in the office for another week. So they offered me to see one of her coworkers, Which I decided to do as I was in so much pain. The doctor walks in and says I can’t give you any pain medicine… Which really upset me because I wasn’t there for pain meds I was there for a round of steroids knowing that I had a surgery coming up. I was so upset in so mad all at the same time. So needless to say she gave me the steroids and I finished them about 4 days before my surgery. I had my surgery and it put me into another major flare…:sleepy:. And then last Saturday my back felt like it was broken. I want to my primary care doctor and she ordered an MRI. I got the results back on Monday And in the meantime haven’t been able to barely walk, stand, lay down. I ended up with quite a few things wrong with my back including central canal stenosis,ligamentum flavin thickening, nerves compressed, facet arthrosis and iliac bone arthrosis…ugh! So my doctor who ordered the x-rays told me to make an appointment with my so called fibromyalgia specialist who is a doctor of rehabilitation who I have been seeing but don’t really care for. I am in so much pain I can barely stand it and I have tried calling him 3 times and hes not returning my calls as I need something for this pain because I really don’t know how much more of it I can take. I feel like doctors just push me from one to the other and nobody’s helping. I’ve never had depression in my life until now and I find myself crying all day every day. I feel useless as I had to quit my job in April and I have applied for disability but of course that takes forever… All I do is sit here un comfortably all day long and I’m tired of it. Sorry to be such a downer today I just don’t feel good and I needed to get it out. Thank you for listening and I hope you are all doing well.
Lisa


#2

I am So sorry that you are going thru this! Call HHS & see if you can find yourself a Case Management Worker, or an Ombudsman-spelling? (just asking For an Ombudsman get peoples attention). Don’t know if you live in a big city or a small city, you can try the Social Worker at the hospital, they have all the secret phone #'s to contact to get you the help you need. Call a 24/7 Help Hotline To talk it out with a non-involved Smart person. At their finger tips is More help. You just Need to have someone Listen to You. I am trying the route of herbal medicinal plants (I am on the hunt for wild lettuce) & it is driving my adult children batpoop crazy. Light, Peace & Love Maggi.


#3

Hi Maggi ! I have the most beautiful, sweet cat named Luna😁

Thank you that is great advice! I live in Michigan surrounded by cities big and small.

It just amazes me how some doctors are so closed minded. It’s like excuse me Doc…do you suffer from this!!

You made me smile with your adult kid comment because I can soo relate…lol.

Keep us posted on the herbal plant experiment and good luck with that wild lettuce!!

Lisa


#4

Hi Lisa, my heart goes out to you. I was just diagnosed with fibromyalgia and am still trying to figure out what a flare looks like for me. I hurt so bad today I just layed on my couch all day with my eyes closed. It rained really hard about two hours ago and now my pain is subsiding a little bit. Strange. Anyway,I can’t even imagine what you are going through. I use to live in Michigan. There are some good hospitals. Please change doctors! You deserve to be treated with kindness and respect. You deserve to be listened to about your health concerns. Keep reaching out and don’t give up! So far I have had good luck with my doctors and I live in the Chicago area. I am at a loss for words. I care. I know my pain and wow it’s intense. You must be miserable. Beyond miserable! Do you have any friends or family support? Can they help you find new doctors? Take care and know you are not alone. Jean


#5

Hi Jean, thank you so much for caring. I’m sorry you have been diagnosed with this, nobody deserves it but I’m happy for you that you have good doctors. My PC doctor is wonderful, I have been seeing her for over20 years. She wasn’t happy about the other doctors behavior either. She thinks there is something else going on with me on top of the fibro. Every time I have a flare my esr and crp are elevated…but I have been to rhuematolog and neurology and they uncovered a positive ANA but that’s it. So frustrating! That so called fibromyalgia specialist called me yesterday evening and is going to send me to an anesthesiologist for an epidural shot. Hopefully that helps. And yes I have the most wonderful, understanding husband and 7 beautiful children between us! I hope your pain will ease today and again thank you Jean, you’re so sweet.
Take good care, Lisa


#6

I’m sorry you’re having so much pain. Are you in a big enough town to find another rehab Dr or pain specialist, if your Dr will not give you an appointment.
They always want to see you before they prescribe.
Can you get more steroid injections?? Or muscle relaxants.
I was able to get disability quicker by getting all my medical records together and using a book called Disability Workbook for Social security Applicants by Douglas Smith. Do the worksheets in it and send them and medical records with application. I did and got ssdi first time I applied. Good luck.


#7

Hi Marlene, thank you for your response. Yes I made some calls and I have found a couple different doctors I will be calling on Monday.
The specialist did call me back last Thursday evening and said he wants me to get an epidural for my back issues. Still waiting for him to call back and tell me where and when…his staff is supposed to be calling me to let me know.

Can I ask you if you have any other disabilities on top of fibromyalgia? I’m just curious and so happy for you that you were approved so fast.

Take care, Lisa


#8

Hi. Lisa. I have chronic fatigue syndrome and spinal stenosis,too. I’ve had fibro for 30years. It’s very frustrating to have this and not be able to do much. I can do about an hour of activity a day at home and can leave the house once or twice a week.

I worked in the disability field so when I got it I knew you could live with a disability, so I didn’t get angry.

But you know how disappointing life with fibro can be.

I hope you find a good Dr. My isn’t great, but he gives me enough meds, so I can tolerate the pain. Wish there was there was something that treated the fatigue.

Good luck with the new doctors. Hang in there. I have a cat and bird.


#9

Hi you are not forgotten ! By the way I am Lisa too I feel the same way about these ridiculous doctors with this pain medicine nonsense I need to knock it off I’m so sick of hearing that like people with fibromyalgia that are the real problem I’m so angry about that they treat you like a criminal and you haven’t even asked for any pain medicine! They should be the one to know you’re in pain you shouldn’t even have to ask what a bunch of fools I cannot stand these doctors for these politicians that go on and on and fighting the war against drugs. Tell me to shut up until they know how someone else is feeling and walk a mile in their shoes . I’m glad you stood up for yourself I would write a complaint about that cold drone of a doctor. These people need to be held accountable for the way they are treating people with real pain good luck to you I am praying for you because I feel the same Darned way. I’ll keep you in my prayers and I am with you from one Lisa to another


#10

Hey Lisa!!! Great name by the way😁
I know it is ridiculous!! Some docs sit there and judge and you can ALWAYS tell when they are n si I ask them…as boldly as can be…do you have fibromyalgia?? Then please shut it cuz you haven’t a clue!!!

Luckily my pcp is amazing! I fired the so called fibromyalgia specialist…whew…bout time! The last straw was him still not calling me back about getting that epidural for my back issues… It’s been 5 days since I talked to him last and no word yet. I went to my primary care doctor yesterday because I found a huge lump on my hip about 2 weeks ago but all of a sudden it started causing me great pain and numbness And tingling and it almost makes me feel like I’m paralyzed in my left leg. So I also got to ultrasound on it yesterday hoping to hear the results today or tomorrow…ugh. When it rains it pours but luckily she gave me tramadol and some more steroids. It doesn’t take all the pain away but Hey any little bit helps.

You’re awsome and I appreciate your feedback and take good care of yourself and we will all stick together and not let these doctors push us around!!!

Lisa❤


#11

Hi! It was so great to hear from you ! I am so glad you got away from that fibro specialist, and he told me to eat more kale. Thanks a lot. I don’t want to wish that health on anyone , but I wish there was someway to make these people a little more empathetic. I know they’re busy, but it doesn’t take any more time to be understanding than it does to be rude and judgmental before you they have even spoken to a patient they make a decision based on who knows what . And in my mind if you pay to see a doctor, and go out of your way to go tell me when you are in pain they Damm all that apply and help you.

I am praying for you about the lump. Maybe by now you have heard . I can’t believe the doctor wouldn’t call you back when every minute is painful five days ? Oh for crying in a bucket, come on. I’m going to start writing reviews on like yelp or something to let other prospective patients know just exactly what these doctors are like.

Please let me know how you’re doing, I am thinking of you talk to someone who understands I feel very isolated. And for some reason I feel guilty because I am not doing as much as I used to it’s almost like I feel ashamed . Every day I try not to talk about it because I know everyone has their own problems but it is really hard when you’re in pain all the time.

Take care and I hope you get some good news. Your fellow Fibro sufferer,

Lisa


#12

Hey Lisa! Sorry it has taken so long for me to respond. Yes and still no call from fibro doc…it’s been 8 days for Pete’s sake! Calling a new doc today to get the epidural. My ultrasound came back and I have four lesions of different sizes…the radiologist that read it said it needs further investigation :hushed: so off for a cat scan. I haven’t even paid for the MRI I had for my back a few weeks ago
Sucks but what are you gonna do.

I’m sorry you’re feeling down but remember you have all of us to try n cheer you up :grin: And I know what you mean bout the guilt…I have that terribly but we can only do what we can do. I hope you’re feeling a little better today and keep in touch.

Lisa❤


#13

Hi good morning! Just wanted to check and see how you were doing hope you’re feeling better have a good day Lisa


#14

Hey Lisa good morning! I have my cat scan scheduled for Friday. It just kind of sucks not knowing what’s going on. I hope you got my last email I’m not very good with this technical stuff lol like emails. I’m old lol. I hope you’re doing well too and I’ll keep in touch and let you know what’s going on with me.Have a great day n thank you
Lisa


#15

Hi Lisa Marie ! It’s Friday and I was just thinking of you and hoping that you are doing okay I am so damn frustrated with this ridiculous Kindle I’m gonna throw it on the floor and kick it with your CAT scan


#16

Hey Lisa!! Lol …electronics…such a pain!
Yes CT today at 3:40! Nervous but excited to have it done and over with so I can know what the hell’s going on. I’ll keep you posted and have a great electronic free weekend lol😁


#17

Good Mornings!

I am thinking of you and hoping that the cat scan went well.

Maybe now somebody will finally be able to give you some help and some relief you certainly have been through the wringer.

I am off to Target , I am hoping for 7 1/2 hours without a single screening kicking or sticky child in the fitting room.

Do something you really really like even if it’s just lay in bed and watch Netflix . After all, it’s our life and we’re the ones who have to live it. We are the only ones who know what it’s like . Take care

Lisa