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Why won't anyone help me?!?

Mar 01, 2016 3:43 PM

So for basically the past 3 years I have believed I have had fibromylgia. Suffering in pain, trying med after med with no relief. A rheumatologist, spine specialist, 2 different primary doctors and finally after asking my doctor for a referral to an advanced pain management clinic did they finally order an MRI and find out I have pertruding disks in my lower spine. So for three years they have been telling me to do exactly what was making it worse. Now the most I can get for pain abet they did a spinal steroid epidural and round of oral steroids are some nerve medication and over the counter which are probably killing my liver because I take so many just to show it am trying everything possible. And I have done everything they have asked of me to do in order to get better yet I am unable to live my life and am depressed crying most of the time because of it. I have told them my pain is unbearable, have been 100% honest and open with them and keep all of my appointments. I don't know what to do and am tired and about ready to give up the fight. I am 30 years old mother of an almost 3, brilliant, baby boy and newly married to a wonderful man. I don't care how I just want to be able to live my life again but being treated like a druggie or abuser or something when I have absolutely no history of it at all.

Does anyone have any Eustis of what some options marri be for me. My thing right now is jerry going into the ER often for my unwarranted pain to show that I am not lying about the pain and will continue to make whatever noise I can until I am heard and helped. I have to much to live for!!!

Mar 01, 2016 4:08 PM

HurtingHom I am sorry you are going through all of this. It's because of addicts, like me, that everyone nowadays is assumed to be an abuser of prescriptions. I have been clean & sober for 12 1/2 years now. So many years ago, a bunch of my "using" friends, would doctor hop to get whatever they could. I never did that, but I watched it happen. What else has happened, is when patients are given the wrong meds/diagnosis etc. and something horrible has happened... Docs are sued, etc. it's almost like now they are afraid to treat us, for fear of not getting paid, or get taken to court, or their patient dying.
It's super inconvenient, and super ridiculous hoops we all have to jump through now a days.
Now that I am sober and truly need the prescriptions to have any resemblance of a safe & most comfortable way of life, I must sign pain contracts, drive over an hour to pick up my scripts... I agree. It's just ridiculous.

Mar 02, 2016 6:01 PM

At lay they are letting you do that. At Thirty years old and not able to shower myself or even cook dinner for my family I'm pretty much ready to may give up totally. I have no life and no doctor cares. Can't you get them in trouble for neglect for bluntly refusing to manage my pain? Are there no patient rights anymore. I don't care if they just schedule the surgery I just want to be able to live. Otherwise I am just dying in reality

Mar 02, 2016 6:16 PM

And I have depression and anxiety so I have to be very careful with most of the nerve medication because it all interacts in some way with medication that I am on and is working which I think some doctors see it as me just not wanting to try that option but I have had some serious side effects and withdrawing horribly from some nerve medication they have maxed me out pass the recommended dose with yet won't give me a low dose or better for my organs a high dose opioid that I only take once a day rather than 15 different med school that. Will ruin my organs one day. I have no history or past of abuse or addiction, I just want to move. People wouldn't let their own animals suffer in as much pain as I have for as long as I have

Mar 02, 2016 6:31 PM

Hunting I am so sorry you are suffering as you are. And you are right that you do have too much to live for. A baby and new husband...they need you and would be lost without you absolutely destroyed if you gave up. Have you tried to focus your attention on something else? Music? Soaking in a hot tub etc. just throwing out suggestions I have heard on here.
Auto...thank you for sharing about your past. How transparent. And that is what they think...we all want to abuse pain killers when all we want is for something or someone to kell the pain.

Mar 02, 2016 6:52 PM

I am sorry you are in pain. Hebis treating your pain but just not the way you feel it needs to be done...have you discussed your treatment path with him? What/How does he feel the pain is coming from. What are his plans, does it involve more injections , blocks, or surgery? Narcotics are much harder to get now than in the past...can you find a different little pain clinic you can use until things calm down. A lot of times, narcotics can hinder healing cuz you are treating a symptom rather that getting down to the cause. I really am sorry you are in so much pain.. Can you try muscle relaxers? Ice packs or moist heat? Obviously, the way things are going you are likely to fall completely apart..sometimes that is necessary ,too. You are in a difficult situation, but I can tell you that you have to try to calm down, as this exacerbates all your pain. You are our new friend and we will always be available to offer support and encouragement. I hope you can ask that wonderful new husband to hold you, and help you find out what you need to do. You will not feel like this forever, this too shall pass. In tue meantime, focus on what is right in your world, love your babies, take a hot bath, listen to your favorite music, read a book, ask you husband to massage your back...make a cake, ...do something...anything, but try to shift your focus so you can calm your body and brain down...Much love and Blessings, Terri

Mar 02, 2016 7:03 PM

My entire spine is messed up since my early 20's with nothing done I am now 47 and I went the pain killers route last year and opted out of it because to stop the pain it knocked me out. I have a 10 year old son so not an option. My physical therapist was at a loss because what helped one thing hurt another. I asked for spine strengthening exercises and worked through the pain learning my limitations. Now I am not saying I don't have days that I cry in pain at a 9/10 but my average pain day went to a 6/7 from a 7/9. My worst areas are between my shoulderblades and my hips and we'll my neck too. Things in the house are constantly being moved so it doesn't hurt me. I can't reach above my head, bend down and so on. So everything is at a middle level I need when no one is home. 2 pain specialists told me there was nothing more they can do. I would encourage physical theraphy, couselor and perhaps anti anxiety/depressants along with learning your limitations and having realistic expectations and living within them.

Mar 02, 2016 7:18 PM

Absolutdo I like your style Shammagren!!! You are rocking !!!! I think we sometimes focus on pain meds so much that we start thinking that is the only way to reduce our pain...it does take more effort patience to work through a high level of pain , but it is more healing and healthier for the mind body and soul. Please don't think I am against pain meds, CUZ I am so for them but they are not the only way, and I have had many days of OMG pain, I completely get it when you hit that emotional wall and that's it you gotta have narcotics to break the pain cycle...I have been there and will probably hit the wall again sometime in the future. Much love ,Terri

Mar 02, 2016 8:01 PM

Find a new dr!! For so many years I stayed with the same dr who made me feel like I was being a silly woman. I had to switch doctors because of my insurance, and the guy I see now is amazing. He listens to me, makes real eye contact, remembers things I have said before, etc. If I had known I could find someone that respected me like this I would have switched years ago!! Still not certain if it is fibro or lupus, but he does so much to help me. Just the fact that he believes me and shows me respect makes a huge difference. If you don't feel like you're being heard, find someone who will listen!! It made a huge difference in my depression levels. I feel like I have a partner in my fight, instead of one more thing to fight against. Stay strong, and most importantly don't let anyone make you doubt yourself!! That little boy needs you. Some days my kids are the only thing that keep me anchored to this planet, but I know what it's like to lose a mom. I know i'd rather her be here no matter how broken she is, so I know how my kids would feel. Don't give up, get mad. Fight for yourself, you're worth fighting for!!

Mar 02, 2016 9:40 PM

HurtingHom, I'm allergic to most pain meds, especially narcs, and most antibiotics too. Like Shammagren, I've had to work on strengthening muscle groups that support the weakest areas of my spine & body. It's between a slow go bit I can tell it's helping. And the quick injuries from the least wrong move aren't occurring as easily, not an I falling as easy. I've also done ESI's all down my spine, for two years. I can't get in/out of things but I enjoy my warm showers, and gentle stretches. I use music, deep breathing relaxation, reading & movies to calm myself. I have migraines & muscle relaxers meds, along with antidepressant & anxiety meds. For fibro & sjogrens pain I have Tylenol Arthritis or Aleve, Plaquenil, and Tramadol for real bad days. When I'm tense my pain is worse. My spine has very bad damage in the neck but the risk of paralyzation is too high for more surgery, so I must learn to read my body's warning signs of when to rest. I hope and pray some of all of our suggestions can help you start to find ways to lessen your pain or at least relax your way to cope through it. Hugs, love, & prayers! ๐Ÿ™‚๐Ÿ’•๐Ÿ™๐ŸŒผ

Mar 05, 2016 6:44 PM

Hunting the pain meds they give me do not work. They make me drowsy during the day and keep me awake at night... But do nothing for my pain... And I watch my intake so I do not become addicted. On the pain scale a 10 is my normal now. I so use to functioning at a 10. I agree with Terri on top of the pain meds what else can you do to relieve your pain? Water therapy use to work for me... Not as much but I still go and sit in the hot tub/ spa. Music also takes me to a different place. Have you tried a Tens Unit? Just throwing somethings out there. Gentle Hugs!

Mar 07, 2016 9:04 AM

I've been where you are. It's frustrating and annoying and the doctors are so slow. I'm so sorry you have to go through the pain. It feels like your life has stopped and everyone else is still moving. I've had chronic pain for 16 years. Sad to say the only thing you can do is keep fighting and accept what's happened to you. You will cry many tears and have many pity parties. Make sure and keep me on your guest list. You will make it through this. There are many drugs that can help but nothing will completely take the pain away. Try to stay away from Tylenol and pain meds that contain it. I take 320 mgs- of long acting morphine and 90 mgs- of oxycodone without Tylenol. I also take lyrica for leg pain and zanaflex, which is a muscle relaxer. You will have to take charge of your pain relief. Doctors are worried about themselves and so they are very cautious about most pain meds but you will know within a couple of days whether something works or not. I also take a anti depressant which helps me deal and keeps the tears away. Please feel free to message me anytime for any questions you may have have.

Mar 08, 2016 4:35 AM

Wow that's a lot of narcotics,Zeus! Sometimes I get jealous of people when they talk openly about all the narcotics they get...I have decided a long while ago that taking narcotics only makes it worse for me..I forget about it when I see the post and someone goes on about alll their narcotics...but after a bit , or ifI talk to some friend that knows me I am gently reminded that using lots of narcotics can cause and does cause additional problems. My primary doctor and I have an agreement, when I flare up and have hit that wall of tolerance, she will prescribe enough to break the intense pain cycle..then I resume my normal non-narcotic meds. This works very well for me..I will have surgery in the near future and I want to be able to get relief . I don't know why I told all of you this maybe someone in our community does this as well, thanks for listening. Terri

Mar 08, 2016 11:23 AM

When I got an xray of my spine, I put it in my phone so I could show doctors why I was in pain. Most said whoa, ouch, and I got referrals and some pain meds from some.
The VA takes its merry time with appts, and my regular NP there either doesn't think I need help or isn't aware of new procedues that could help. Sigh.

Mar 09, 2016 6:29 AM

Hurtinghom- how have you been this week? I have been thinking about you a lot. ๐Ÿ’

Mar 09, 2016 7:48 AM

I don't know if it would work in your case but it worked in mine. I had problems with my lower disc and I used a TENS unit. Many people use them and don't get results but a lot of people don't use them right. They will put them on the pain sight. But it is meant to go before the pain sight and a path to the brain to pain block signals to the brain. If it works, they could install one in your back. I recommend asking the doctor for a visit to a visit to a physical therapist so they could help find the best path and show you. Best wishes to you.

Mar 09, 2016 11:16 AM

I am so sorry for your pain! Yoy are so young! I was very young when I git sick as well & it took years to get anyone to listen! Keep doing what your doing & dont shut up untill someone listens! You may want to try a natural path doctor, they are exspenive but often will listen & help when GP's are often only interested in getting the next patient in so they can make more money! A good natural path will take time to listen & take steps to get you on a healthy road! Its worth a try if youve tried everything else! Best of luck!

Mar 09, 2016 11:29 AM

One of the best ways to control inflammation is to eat a nutrient-dense diet filled withย healthy foods & lower your intake of sugar, processed meats,ย ย refined grain products, alcohol and packaged foods

Mar 09, 2016 8:31 PM

Profiler- I never knew that about the tens units! Thank you for that information!

Mar 09, 2016 8:33 PM

Herbchick- where would I look for foods to eat? I search online & I am forever stuck reading ads!

Mar 09, 2016 9:01 PM

Autoimmunerrrrrr, anti-inflammatory foods are quite easy to find. They start with turmeric, garlic, omega3's, & pineapple. Turmeric is the most popular option but is tricky to activate. If taken with an oil (olive, coconut) and black or cayenne pepper, then it is very effective in reducing inflammation. Others also swear by special diets with no grains, sugars, processed foods, or nightshades.
I have an inflammatory disease. The best thing for me has been being active as much as possible. This does not really mean going to the gym. Swimming, walking, chasing the kids around the yard, playing at the beach, motorcycling, skiing, boating, dancing...you know...having fun living life. Stay off the couch and get out of bed. That is the best thing you can do.

Mar 09, 2016 9:37 PM

HurtingHom, hello, I am glad you are here. Looking at your pain diagram I recall when my sciatica is at it's zenith, and the pain is so much more than I can bear. Thinking about those times makes me feel like I will vomit and I know that kind of pain is always there, an evil lurking force. It will return. I agree that you may need to go to PT for a bit. The therapist I saw was so careful & compassionate. He worked with me to get the horrendous pain to just really bad pain. From there I began to learn to manage (some days) my pain through gentle strengthening movements, water therapy, TENS until it stopped working, antidepressants, heat, massage and otc pain relievers. I started taking Lyrica & anti seizure meds. Next was exercise plan to make surrounding muscles strong. I have a routine that takes an hour & uses balance ball, free weights, bands, core strength, small weighted balls, yoga, balance pads & board & recumbent bicycle. I used counseling for 6 years where I learned good self talk & how to be gentle with myself & how to say no to People & places that are bad company.
You are just beginning. Ask for your doctor's very best advice & take baby steps to begin to walk the pain path. You might consider asking your husband to accompany you to see the doctor. You will be in my thoughts & prayers.

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