Finding a doctor that will listen

[ReciesPeaces]

Hi everyone, my name is Renee and I’m new here. I’m not from the UK but I couldn’t find one of these groups for the US. To give some background, I started feeling more tired than usual but n my late 20’s after my hysterectomy. Gradually pain started: my back, hands, right knee, headaches, and my feet and hands would go numb especially when it was cold out. This gave way to more pain and I guess u would call them flares, where I am down anywhere from a few days to more than a month, just completely exhausted (crawling to the bathroom exhausted). Now I have severe tingling and shocks in my hands and my symptoms are much worse (I’m 40 now). I’ve seen several drs, 1 came back with lupus but retired, got labeled with depression with the new dr, ER dr did tests 2 years ago and said hypothyroidism, nurse practitioner 2 weeks later said no. Labeled depression again and a new round of terrible depression meds. Which obviously didn’t help. I can’t seem to get a dr to listen and I’m just getting worse. Has anyone else had this problem and if so, how did you solve it? Any help is very appreciated.

[Yassytina FMA UK Volunteer]

Hello and welcome, yes it can be hard going from one person to another and feeling like your not getting anywhere, do you have to pay to see doctors in the states as your system is diffferent from ours ? Have you got a doctors surgery you can change too near where you live and write down all what the doctors @ practioner nurses have said who you have seen in the past few months, a diary of daily symptoms so there’s no questions you forget to ask . Being depressed can come from constantly being unwell as many of us have experienced and everything gets on top of you ,all you want is too get some answers to move forward with everyday living Xx

[ReciesPeaces in reply to Yassytina]

I have kept a diary. I started it because I thought my symptoms were crazy and with memory problems I have a hard time remembering unless it’s a problem at that moment. But sadly yes, we have to pay for medical care in the states and it’s extremely expensive. I even qualified for Medicaid for a while but it truly seemed like every dr I went to just dismissed me as a poor person or someone wanting pain meds and we have a very strict policy on opioids. It’s kind of funny because unless I’ve just had surgery I can’t take them. I have to cut them into small pieces or I get really sick. I’m on the hunt for a new doctor and some affordable insurance since everything else here has skyrocketed in price. Unfortunately insurance was a cutback we had to make. 300 a month isn’t doable right now . And yes! Depression isn’t the cause, it’s a side effect that most people including doctors don’t understand. But mind you, I got the depression diagnosis after a 4 question questionnaire I had to do before I seen the doctor. 🤦🏼‍♀️

[Yassytina FMA UK Volunteer in reply to ReciesPeaces]

It seems so hard getting the right help , you just feel you want to shout out to them are you listening to me 😏, our NHS sevice is under pressure , Covid has played a huge part like so many other Countries I imagine, sometimes I read here people getting to see their normal doctor is a tall order especially with Winter months of Covid and flu , staff getting sick , it makes me feel like hibernating , I wish you good luck in getting the right help xx

[Sleepyhead22]

I'm really sorry that sounds so frustrating!

When I started getting FMS symptoms I was told by a Dr here I had GAD but the reason I was so anxious was because I was so unwell and under pressure to live like I wasn't. It took me years and several GPs to find one who really seemed to believe me and even did additional research after she saw me.

So personally I would say don't be afraid to ask questions or to ask for another opinion from another Dr. I would write out all my questions and anything I want to mention in advance. There have been times where I've requested double appointments to make sure I could properly explain myself and get all my questions answered.

[ReciesPeaces in reply to Sleepyhead22]

I totally understand. I’m still looking. Several appointments for different doctors coming up. Hopefully one will help. And Yes! The entire time I’m at the dr trying to explain she’s rushing me out the door. How are you supposed to explain all this in 15 minutes or less? And they want to start with one problem…. All the problems I have seem to be stemming from the same place.

[Macaulay1]

Hi sorry to hear you are having to put up with doctors who do not understand the condition. I was diagnosed 11 years ago and have had a few similar experiences. The secret is find a doctor who does understand and will support you. It is not all in your mind its real and its rough but there will be times when you feel better. My best advice was given by a professor at a London hospital it was guided exercise this meant doing any exercise, this could just be a short walk or what ever you can manage that day. Just do what you can, I started walking for 2 minutes only on my treadmill very slowly. You then repeat this exercise for at least 5 days a week. The next week you increase it just a little no more than 20% and then do it for another week and repeat slowly building up you time and in time you find you are feeling so much better. It seemed impossible for me I was at such a low physical and emotional place but I did it and yes I still have fibro but I can get to a better place by doing this. Good luck

[ReciesPeaces in reply to Macaulay1]

Thank you. I’ll definitely try that!

[Macaulay1 in reply to ReciesPeaces]

The secret is pacing don’t try to do too much too soon, only increase the time once a week and only as much as you can do. It helped me way back when I thought there was no way out of the tiredness and pain. I slept better…eventually. I have had to start on it again though as of course once I felt better I stopped doing it, however I have never gone back to only managing 2 minutes and it helps me feel I have some control over how I feel. A trainer who had has fibro said he decided it had taken all of his life he was going to let it and he seems to be free of it now…….didn't work like that for me but it has improved my quality of life. Good luck

[Aoibheann]

Hi and welcome from Ireland. I wish you well. 🙏☘️

[ReciesPeaces in reply to Aoibheann]

Thank you so much and most definitely the same to you.

[Aoibheann in reply to ReciesPeaces]

👍👩‍❤️‍👩

[Lupusrelative]

Hi ReciesPeaces! May I ask whereabouts you are in the US. I’m in Colorado and have a really great doctor who is very supportive.

[CheetieCat]

Hi Renee, have you had your Vitamin D & B12 levels checked recently?

nhs.uk/conditions/vitamin-b...

my.clevelandclinic.org/heal...

Sounds like you may have a lot of nerve pain too. A good strength B Complex might be worth supplementing to see if nerve type pain reduces at all.

medicalnewstoday.com/articl...

Magnesium is good for muscle pain & cramping, sprays are really good & you can also use tablet form.

medicalnewstoday.com/articl...

Obviously I'm not a doctor or medically trained in the slightest so can only suggest going on my own personal experiences.

Definitely have a diary of all your symptoms & when they started when you do see a doctor.

Really hope you get the help you need soon x

[LPASQUILL]

Hi Renee I'm sorry you have been through this but I was the same no doctor would listen I would just get it's muscular pain or a strain but I got a new gp and he listened and helped me so much and referred me to rheumatology which is where I got my diagnosis but not the 1st time I had to see 2 before I got it but I just had to keep pestering my gp's also if you work ask if they have access to occupational health if so ask to see them and see if they can help.

[IsThisIt]

I see you're from the States so I thought I would write my first words on here to you. I was diagnosed (by a Rheumatology doctor) this October after 5 years of what I can only describe as the worst thing I've ever experienced....and I've experienced a lot in my life! Surgery...all my torment and pain started the minute I opened my eyes from sinus surgery. It has gotten worse with every month that passes...sometimes I'm amazed that I'm still alive. The body is amazing as far as how much it can handle. I'm writing to let you know that I understand your pain and your frustration. This is real, you're not crazy...they may try to make you feel like you are, but...you're not! I'm rambling now. Sorry. Not used to talking to anyone about all of this. So much stuff in our brains and I imagine a lot of us struggle to try to explain it all. I grew up in California and have lived in the UK since 2001. I'm familiar with the system over there. I always had Kaiser and that was a long time ago so I'm sure some things have changed since I was living there. Did you say you get Medicaid? If you do...then use it to the fullest. Don't let them pawn you off as another depressed woman. It seems to be the norm for a lot of us. Like you, I believe my illness is stemming from something else, possibly vascular disease caused by my surgery. I would be interested to know how many of us had surgery and then right after surgery all of this started happening!? I'm going to stop now because my brain is going into overdrive, haha. How can Fibromyalgia not be a greater concern in the medical field? This isn't something you get and then go for the cure, this is torment for most people that have it. Before this happened I was able to get to the point much quicker. lol. Now I'm not just rambling...I'm confused too. Anyway...my heart goes out to you today and I hope you wake up and have one of your "good days" ....and by good, I mean able to function in an almost normal way. (((Big Hug)))