Venting ... so angry, frustrated, worried, and sad :(

General
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Hello, all!

I did finally get an appointment to a pain doc for February, which is good news. But, that was only after the Connect Care from my PCP office told me the best they could do was a doc that only gives an injection and that's all bc I'm on Medicaid. I'm not really sure what to expect from the pain doc they did finally MAGICALLY find to do more than just an injection. So, I am happy that maybe I will get pain relief, but also apprehensive bc I don't know what tests pain docs do. For all I know, the pain doc may tell me the same thing as my PCP and neurologist ... that they can't help me with pain.

Then, I received a call my neurologist's secretary saying that my neurologist has dropped me on my butt bc of changes in the laws for Medicaid. WTF? So, now I am in horrible pain (I have this every day, but sometimes it gets uber bad) and have to wait yet again for the appt. I'm so angry that my neurologist left me, frustrated bc I hurt so bad and no one wants to try to help, worried bc I don't know if the pain doc will help, and sad bc I am on a pity party trip and feel like I will hurt like this forever. No one seems to understand how terribly I hurt! I mean everything from my ankles to my neck hurts like ever loving hell. Sorry I needed to vent ... the pain is more than I can bear, and I have tried everything I have found on the net to help. Thanks for reading my post. Hugs to everyone!

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My pain dr gives me muscle relaxers, pain meds, trigger point injections, Botox injections for my migraines. He also sees me in emergencies when I am in terrible pain in between visits. I am now receiving extra migraine meds that assist my Zomig.

Some pain drs give opiates, but studies have shown that they are not the best for fibro. Good luck Susan and I hate that about your neuro.

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I understand your frustration so vent away. I see a pain management doctor and they have given me everything from Vicodin to trigger point injections. They started with Cymbalta which I could not take due to making me tired on top of my fatigue and then Savella which elevated my blood pressure so I had to stop each of those. The injections helped at first then quit being effective. I also had IV Lidocaine treatment but after awhile that no longer worked either :frowning: They wanted to tdy Botox for my migraines but insurance would not cover. So now I take Norco in place of the Vicodin because it has less aspirin in it. I take it 3 times a day since my pain is so bad. It takes the edge off for a few hours so I can try to function. I take Inderal LA also for Migraine prevention. It’s sad that everything out there for Fibromyalgia is something I cannot take or my body doesn’t like for some reason. Good luck with the new doctor. Make sure they believe in your Fibromyalgia and hopefully they can find something to help you.

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Hi, Fox!

I take Cymbalta 60 mg a day and Lyrica 150 mg three times a day, and I am still in the worst pain I have ever experienced in my life. I have tried stretching, heating pads, electric blanket, capsacin, icyhot, aspercreme, acetaminophen, Aleve, warm baths with Epsom salt, and massage from the help of my wonderful boyfriend. Nothing eases the pain at all. It makes me wonder if the pain doc has some sort of meds that will help. My PCP just wanted me to see a psychologist until I demanded a pain doc. Last night was a booger! My head was hurting so bad along with my upper back feeling tight enough to snap. I had/have burning pain in upper back, rest of back burning slightly less, horrible hip pain, and burning of the skin in my upper leg. I just hope I am not in pain like this forever ... I can't take it.

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You poor thing! I so remember those months, the pain is unimaginable! Believe it or not the pain gets so bad at times i actually thought that breaking my knees would feel better than the pain i was in, so sweets i know just how you feel. I too have medicare and the dr can call them and try to over ride saying you really need that medication my dr has had to do it a few times, so dont let them tell you any different and yes even with the new changes. I dont know if you have a rite aid near you but they have this big plug in hand held massager where you can either use it for massaging and heat or just heat, i use it on my worst trigger points and it helps alot, although i will admit it does look like a really big um... hahahah, but its so worth it when i have a fibro attack. It took me a couple of years and so many drs to find out what it was i have and that it wasnt in my head or that i was a pill head etc. Then i found a dr who knew what pain was and ive been with her ever since. I thank God everyday to have found her because she actually cares about her patients health and i see her once a month to keep me regulated on my meds and symptoms. I tried the injections and for me they didnt work but for some they do but anything is worth a try. If you have nothing for pain id stick with ibuprofen, i take an 800 mg pill if i have breakthrough pain and it does help. But if this dr doesnt help id already have others lined up because if a dr doesnt know pain he or she isnt going to be much help. Also rite aid has a special plan you can join when you scripts cant be covered it takes off tons of money so that you could afford it.Your always going to have pain sweets, thats just the monster called fibro but it can be managable so you can live you life pretty well except with flare ups, so always keep something extra for your flare ups. Im sorrry i probably wasnt much help, im just babbling, i just hate seeing all these people coming in here who have just found out they have it and are lost as to what to do or how to feel better, if i could take away your pain, i would. Good luck and feel free to vent and keep us posted, sending you hugs. Whisper.

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Aloha Susan. I hope your pain mgt doc does more for u than mine has. He tested if I was a good candidate for radio frequency ablation where they block the nerve endings transmitting pain to the brain I thought I finally found the solution to my horrible pain but turns out I’m not. Next wean me off Vicadin one less a week. I’m down to two and maybe have some relief enough to do things for abt 5 hrs a day then it is back to suffering the rest of the day. He wants me to see a phycologist now to handle the pain with cognitive therapy and breathing exercises. WTF? Don’t these docs realize how much pain were in? Sometimes I just don’t want to get out of bed and just want to sleep the day away if I could. Walking is hard bending any movement hurts so bad I just find myself moaning out in pain. My husband has been wonderful but it’s starting to take a toll on him as well. My memory is also very bad which is frustrating. The other day I could not think of my own phone number. So like I said I hope the doc you are going to see can help you. Let us know what happens. We are all on this together so any info on what works for u might also help someone else.

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Hi Susan - I am on Medicaid too. I understand how you feel. For a long time I was on Celebrex, which worked great for me. Then sometime last year - I took a script to the pharmacy to have it filled and they told me that Medicaid took it off their list and are no longer paying for it. I was SO upset, because it was the only anti inflammatory that worked for me. Since then, I haven't been on anything for the pain. Every Med I have tried, I seem to get bad side effects. I was very excited when Lyrica first came out. Sure enough I was allergic to it, so that was it. Having Fibro is extremely challenging and I know quite a few people that always have to do a 'trial and error' thing to find something that works. It took me a long time for the doctor to realize that Celebrex was the only thing I could take. Susan, I feel so bad about what you are going through. I wish I could help you out! .It brings tears to my eyes when I see how hard all of us work trying to find a remedy to help us with our pain. It's just so unfair at times. As far as the 'pity party' that you mention, it's okay to feel this way. The sheer frustration that you go through to tell someone how you feel and that you want to get better, seems to be lost somehow. I get so tired having to describe to people what I go through - and the idea that they don't take me seriously, is just horrible. Susan, know that we are here for you! Vent all you want, as this is one of the ways that we can feel better. Keep me posted as I am anxious for you right now. You have a wonderful group what surrounds you with love and care. Gentle Hugs! Laurie

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hey, oh my gosh, you dr wants you to do breathing exercises??? seriously? Well im sure your much more well mannered than i am but you shouldve told him to try doing his own breathing exercises where the sun dont shine! Please find a new dr until you find one who understands what pain feels like and doesnt say its all in your head.My worst thing is standing and leaning over motion like doing dishes for too long or raking leaves stuf like that hurts me bad, and as far as the memory is that from the fibro? That just started happening to me about 6 or 8 months ago, and its very scary to me, how i can forget a tv show or a conversation i had just recently. Ive had fibro for years and this memory thing is new, ill have to look into this, thankyou. Please take care of you first and if you dont completely trust your dr then move on, remember YOU deserve the best treatment, WE all deserve it! Sending you hugs. Whisper.

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Hi Susan, I know how frustrated you are, as my health ins just ended and I’m trying to decide what the heck I’m going to do. It seems Medicaid is not accepted by most pain management dr’s… Which makes no sense bec most of us in pain can’t work enough to get good health coverage … Ugh , I have been with the same group of pain dr’s for 8 years. ( prior to fibro they treated my neck and migraine issues ) anyway I just learned they won’t continue to see me, even if I am self pay… Like really, I thought I would just suck it up and pay the office visit every 3 months, to get my scripts… NOPE !
so I do understand your frustration, what I started to do, is search for dr’s that do take it , Thank God my primary said she will continue to give me the meds they did…
Do you have a rheumy ? And if your primary is not helping you, keep looking for someone that will, there are a lot of dr’s that do take Medicaid… You have to search till you find one that will help you manage your
symptoms. I worked for 25. Years and always had great health ins. So this is so scary, I hate how you are treated differently bec. You are in pain and can’t work… I hate that I can’t work… I loved my job and career, but we can’t give up… Venting is ok, we understand and your not alone. Was that neurologist doing anything for you ?
Don’t give up on the new pain dr. Just yet, I have learned to come right out and ask, can you & will you work with me to help manage my symptoms from the fibro? And I go in with a list of my symptoms, if they care they add the list to your chart, if they refer you to someone else, they don’t want to help you and honestly you don’t want to be with someone that doesn’t care. We use up to much energy just going to the dr’ so I’d prefer not to see someone that doesn’t want to help me.
I hope you have a better day, do something special for your self… Maybe a pedicure, or hot bath
Hugs & blessings
dee

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Susan,

Hello, my dear. First, vent away, vent all day. All of us have been where you are. I know it seems like this will never end and in a way, you are correct. There is no cure for Fibro and as a result, everybody who has it must find a way to get through each day. I know that sounds hard, especially when you say "the pain is more than I can bear" - Think about that. You are dealing with it, everyday. Now you might be in the fetal position, rocking back and forth, unable to do anything. But in that way, you are handling it.

I can tell you that the exploration you are on, while sucky and painful, is necessary. There is no magic pill for FM so YOU HAVE TO FIND WHAT WORKS FOR YOU. Are you getting the right amount of support? Family support? Friend support? Support from a therapist? Just having somebody to talk to helps. It doesn't take the pain away but it sure helps.

As to this pain doctor who does injections, I have a personal warning. If he is talking about TRIGGER POINT INJECTIONS, you might want to see what else is available. My experience with TRIGGER POINT INJECTIONS was short-term-good, long-term-bad. In the moment, the doctor might inject nerve bundles with marcaine (an analgesic that lasts for about eight hours). He'll use that freeze spray and stretch/loosen that muscle. For me, after eighteen shots, I felt great. It was a short-term break from the pain that I desperately needed. However, eight hours later, the marcaine wore off, the pain was back and I was sore as hell from eighteen injection spots. So, nine hours after the treatment, I was in far worse shape than I was before the treatment. It then took two-three weeks before I could see this doctor again. After six-months on this eight-hours-good, 328-hours-bad cycle, I quit and moved on to the next attempted treatment.

That's the thing...YOU HAVE TO KEEP TRYING UNTIL YOU FIND SOMETHING THAT WORKS FOR YOU. For me, in my first two years, I found that the following things worked for me and none of them were magic treatments (in fact, most are common sense and require little more than tenacity and patience):

  • getting a good eight hours of sleep each night - the single best treatment for FM (have you been to a sleep study?)
  • getting regular movement - Think of your body as a sponge. When you do not move, your body is like a dry sponge. Have you ever tried to bend a dry sponge? When you move and get the blood flowing, it is like you are wetting the sponge.
  • Keeping your weight in check - a combination of good diet and movement
  • educating yourself about FM - a great place to get information is NIAMS at NIH. Their web address is http://www.niams.nih.gov/Health_Info/Fibromyalgia/default.asp
  • and finally, advocating for yourself. Think of it this way, if you do not look out for you, who will?

I am here if you need someone to talk with/to, yell at, cry with, etc., I've been thru the fibro gamut for more than twenty years. If you want, I'm happy to call you and speak since I know how awful typing is for me. I'll even assume the phone charges (if you are in the continental US). The bottom line is, if you want to communicate, I am open to that. I know how awful the bad days of FM are and want to reach through the computer and give you a hug and tell you everything will be okay. The truth is that, if you find the things that work for you, you will be able to manage your fibro. That is the best I can offer. Your FM will never go away so you need to make room in your life for it (like giving a boy/girlfriend a drawer or part of your closet).

Feel better.

Marc

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Susan,

You have my pity. Not only are you in serious pain but you're not getting enuff treatment for it. The shots may help, and hopefully they will. But my gosh, you need to have blood tests run to see if you have anything more than fibro. And even if it's "only" fibro, they need to keep looking for pain relief for you.

If you can afford it, maybe you should try acupuncture or massage, even if only for a half hour. Did you ever find the Salon Pas pads? They do help me control some of the pain, esp if I put more than one near the sore area. Also, maybe medicinal pot? Can you ask your GP for muscle relaxers or anymore pain meds? Higher dose of what you're on, for instance? Sometimes the higher dose does the trick, whereas a lower dose doesn't do much.

I also do recommend that you continue to do research on your family line to find out if autoimmune illnesses or connective tissue disorders run in them. Knowing this might give you an inkling of what might also be plaguing you.

Good luck. Susan, and keep venting. Venting keeps us going, gives us that blast of energy to keep fighting this crime of an illness.

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Hi Susan, the best pain relief is obtained from Narcotics and some Fibro-sufferers choose to utilize them. Ofcourse, there is an addiction issue that one must seriously consider when choosing these meds. Also, not all Pain Management docs will agree to prescribe them, but some do and a lot of docs also accept Medicaid (esp. private ones!) So, if you decide that the risk is worth taking - go ahead, but do make sure that you’ll give a very thorough consideration prior to it. Best of lack! Let me know how you’re doing.
Warm regards to all,
Olga

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I hear you. I am also on Medicaid now was on a self employed state insurance plan, and do to changes in insurance regulations, I keep having to change Doctors. In two weeks I get to tell yet another Doctor my Medical history. I am seriously thinking of typing it out so I can just hand it to the next doctor and stop repeating it all the time. At one time I felt relief when I got a gp that got me, Now I just wonder how long will this last. The most frustrating thing is even with insurance I am not getting good care because I have to start over so much.

I did find an office associated with a hospital That claims to accept all insurance. I have to drive 40 minutes to get there but at least I am learning there system. Still I have had three different primaries there.

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Hi Susan. I used to work at my county's health clinic. My job was to refer people to specialists. I hated what I faced every day. Lots of "no's" with our medicaid patients. Frustrating, not being able to get people the care they needed and deserved. I am so sorry the neurologist has dropped you. I don't want to give you false hope, but sometimes there are other specialists who can take you. Find out from PCP if they can refer you to a different pain specialist in the area or ask the PCP if it might be possible that he missed something when sent your diagnosis code on referral. Maybe he accidently neglected an important dx code or he can think of one to add. Sometimes the system can be manipulated in your favor.

As far as the pity party...you go right ahead. It's ok to be mad and your feelings hurt and it's ok to cry because it really does suck. I'm sorry. I hope you find relief very soon.

L

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I am so sorry your in so much pain sweetie, sounds like you've been through a lot and still going. The still going is good, your not giving up and don't. Just know your being thought of and can vent anytime.

take care sweetie,

Anna and much hugs back at ya.

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Wow I found someone who has some of the same things going on that I deal with. Doing dishes is one of the worst things for me. My doctor said no more raking leaves or working in the garden. I have a vacumn that pulls itself which is a big help. My husband built a platform for my washer and dryer(both are front loaders) so that I don't have to bend over to get the laundry done. That has been a great help to me. I have had to learn different ways to do things and to pace myself. Sometimes things just have to wait until another day. Now I am dealing with this fibrofog thing. I didn't know what was happening until about two weeks ago when I ran across infromation on fibrofog. I thought I was losing my mind. What kind of fibrofog symptoms are you dealing with?

Hope your feeling better, Sue

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http://www.nsanky.com/pain-management/procedures/

Dear Susan,

One of the biggest mistakes I have made was walking into a Pain Management office unaware of their practices and treatments. The best advice is to learn all you can about them, even if you have to print this or something similar to it, and take it with you. If it is not explained well enough, google for more info. Just know what you are going to be sold before you get there! Have a driver if you possibly can if they plan to do injections first visit!!

I hope this is of help to you and that you can get relief from something that they offer, they really do help some people. All Drs want to hear that you want to get better.

I am also a big believer that we all should be seen regularly by a Rheumatologist. They and my GP help me more than Pain management did, but then my GP prescribes me Opana, and my Rheum prescribes me biologics.

Wishing you all good things!

Love and hugs,

SK

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Hi Olga, may I ask which narcotics help you the most, please? I take Opana.

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Susan.

May I ask what was the neurologist doing to help you with your fibro? I had no idea that a neuro doc was even involved with this condition. My understanding with Pain Doctors is that they try and manage your pain without opiate related meds and some type of trigger point injections. Personally my Doctor only referred me to one due to my Osteoarthritis not my fibro. After 2 nerve blocks I was still the same, so being the stubborn person I am I dropped them. Personally I don't care if studies say opiates are not good for fibro. They have not done enough study on this condition to state this in my opinion nor are they experiencing the pain. We would probably all eat dirt if they told us there was a study where patients took it and felt better. I wish you well, honey and really hope that somewhere there is an answer that will at least make your pain bearable. I am not sure which way you can turn but hope it takes you in the right direction. My prayers are with you and I can definitely relate to your dilema.

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Rattled,

The woman said it was because of the new laws for Medicaid. I couldn't believe it! So, because you may not get as much money, you just drop me like sack of poop? Honestly, he wasn't doing much for me anyway. I have asked for a rheumatologist and my PCP said there was no point in it bc they do the same thing as a PCP. I don't want to start with a new doc bc then I would have to start from point one. That's a whole lot of trying to explain my problem and tests. I hurt constantly and am gaining weight like it's nobody's business. And, I can't get up much to try to get the weight off. Fibrofog is making me feel like I have Altzheimer's. This is very aggravating!

HUGS! (gentle ones)