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New Member Introduction

Hello Fellow Chronic Pain Sufferers,

I am glad to have found this support group. Very glad. I have NO SUPPORT at all from family and am too sick to have any friends left. Nobody can relate to what I am going through and I am so isolated. I am so debilitated that I am home bound
for the most part (I do go to doctor appointments and must do things) but I am needing to lie down most of the day.
So- close to bed-ridden as well but grateful that I can still keep up on my hygiene and housework as long as I only do a little bit every day with lots of rest in between activity.

I have been suffering from chronic migraine (cluster) headaches since I was 16 yrs. old and had some other health problems also at a young age- like Hypoglycemia, REM Sleep Behavior Disorder, GAD and PTSD. I was able to keep a job and still live a fairly normal life while managing these problems.

I have become pretty much home bound and bedridden since 2009 due to severe chronic pain, injury, and disabling conditions.

I was hit on the freeway from behind at high speed in a little Ford Mustang by a huge Dodge Ram with snowmobiles on back
in 2006. After that car accident I had slurred speech, severe chronic pain in my left leg and lower back, chronic pain in my neck and a lot of neurological problems. I have not had a day since that I have not struggled like crazy to just shower and dress myself. I forgot how to do my job. I forgot how to cook. I forgot everything it seems like.

I have severe memory problems and have been diagnosed with post- concussive syndrome, REM Sleep Behavior disorder, chronic pain, chronic migraine-
cluster lightening bolt headaches (the lightening bolt bit is added in by me), seizures (mostly happen in my sleep), hypoglycemia. severe muscle damage, severe depression, herniated and bulging disc's with nerve root compression,
Degenerative Disc Disease (moderate to advanced), PTSD, Anxiety disorder and panic attacks. I am probably forgetting some things.

It does look like I am going to be diagnosed with Parkinson's Disease or Multiple System Atrophy (I am having bad Movement problems now and the REM Sleep Behavior Disorder is a "precursor" to these diseases). My dad just died from Multiple System Atrophy and I have ALOT of the same symptoms. I feel like I had either Parkinson's or MSA before the car accident and the car accident trauma brought that forward if that makes sense to anyone.

I tried so hard to keep my job and keep going with no help from family/friends, co- workers etc. - they just all wondered what had happened to me. It was so embarrassing. I could not figure out how to get help. I had great insurance at the time but all I
could figure out to do because of severe confusion, brain injury and pain was to see my PCP. He kept trying me on all kinds of
anti-depressants, muscle relaxers and NSAID medication which I had horrible reactions to. I kept telling him that I needed help
for the pain. That pain was driving me out of my mind and I had NO quality of life at all. No sleep, no eating, no friends, no social activity etc. My PCP would only prescribe 30 5 mg Lortab a month for me. I somehow made it until 2009 at which time I tried to take my own life because I was in such severe pain that I just could not deal with it anymore. I should be dead.

I had Liver Failure, Kidney Failure and Multiple Organ Failure due to Tylenol Poisoning. Ouch. I finally got taken seriously and put into Pain Management. Thank The Lord. I now have problems from the Liver and Kidney damage and a huge hernia right below my Liver. The good news is that I have a very good pain doctor now who has put me on MS Contin 30 mg twice a day
and 15 mg once a day. That has improved my life a lot. I mean, I can at least sleep and eat now and have enough pain control that I have not tried to kill myself again. : ( pretty sad but I am extremely grateful for those small things. I still struggle every day to shower, dress, do a little housework etc. life has become so hard.

That is the situation. I need surgery on my hernia and need to see a Liver Specialist and the same (only) Neurologist who treats MSA that treated my dad but I am broke. I am currently on my second claim for disability benefits but keep getting denied. I just went to my second ALJ Hearing (even though they determined there was no job I could do at the first one, I was still denied) so I am praying that I get disability benefits. I cannot keep living if I don't get approved for disability. My mom has to pay for me to go to the pain doctor and Medicaid covers my prescriptions but nothing else. It is too expensive for my mom to keep taking care of me. I am going to have to go to a state that will humanely euthanize me if disability benefits do not come through for me.

My heart goes out to all of you who are suffering and dealing with disabling conditions. It has become so hard to get pain medications and medical help. It is overwhelming. I pray for you all.

God Bless all of us who are suffering with chronic pain and chronic health conditions.
With Love and compassion,


  • So sorry for the long post guys.

    I just wanted to give the details of my situation and unfortunately- it is LONG! Lol!

    Much love to you all!

    God Bless all of us who are suffering with chronic pain and chronic health conditions.
    With Love and compassion,
  • LizLiz Posts: 7,832
    edited 08/17/2014 - 8:43 PM

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • Have you seen or consulted with a spine surgeon for your spine conditions? Many of the symptoms you describe, neuropathic and muscular could be related to your spine, and you may find that by seeing the correct doctor, and finding out if there is anything that can be done to treat those conditions, may wind up improving your life significantly.
    If there is anything that can be done surgically to correct any anatomical problems, you may find that you are far more able to do things, and take care of yourself, both physically and mentally.
    Do you have a therapist that you see regularly? Depression goes hand in hand with chronic illness and the support from a therapist versed in chronic medical conditions can do wonders to help.
  • Thank you both for responding and for the links you provided. I will read those.

    I have not seen a spine surgeon nor do I have a therapist. I know I need these things but I can no longer work and am completely out of money. My family is not much help. I am lucky that I am able to see a pain doctor and get some medication so that I am not crying, moaning and trying to kill myself all the time. I wish someone would have helped me to get in to the correct doctors while I still had good insurance.

    I am hoping for disability benefits so that I can get the proper help and maybe improve my condition enough to work and have a life again. I am sure willing to try anything but am also scared because if anything was to go wrong- well, I don't have much
    more to loose before I am unable to move at all.

    My MRI shows that the little bone at the end of your tailbone called a coxxyx (spelling?) is completely broken off and lodged somewhere in my body. Feels like that thing is right up against a nerve. The left leg pain is my biggest complaint and the thing that drives me crazy, but the REM Sleep Behavior Disorder and the possibility of having parkinsons's or MSA ( same disease my dad just died from and is hereditary) is really not good.

    The most important surgery I need to have first is to get my hernia fixed. If it becomes strangulated it will kill me within 2 hours. I have had times where it has become strangulated for a few seconds and I have got it to go back in. That is so horrifically painful. Unfortunately, the PCN Medicaid insurance is all I have until and unless I get disability benefits and it will not pay. The PCN Medicaid insurance does not cover anything really except pays most the cost of my prescriptions. I am grateful for that.

    I am hoping to find some others who are suffering such as I am to just relate to. My family does not understand chronic pain at all and their religion is against using any type of pain relief so they pretty much treat me like I am a drug addict. I am not even " allowed" at my sister's house anymore. : ( it is ridiculous. They think they have chronic pain too and that I need to just push myself through it. Lol! I can't push myself anymore than I already am. It is a good day for me when I can wash my hair, shower and do a little housework. Meanwhile, they are out shopping, going to lunch, vacationing etc. I can't do any of those things.
    I feel so alone.

    God Bless all of us who are suffering with chronic pain and chronic health conditions.
    With Love and compassion,
  • is a post you con punch in at the top on the search bar to bring it up, i think you will like it and maybe have your family read it as it is also hard for me to explain chronic pain to family members that think its all in your head, we know its not and it will help them maybe understand and with that maybe be a little more syphathetic as to your situation, ive had some of my family read it as i dont explain it well enough for them to understand what people like us go through,its not in our heads and i am still the same person inside,people think youve changed and thier right , the pain takes so much of our previous life,like being able to do alot of the things you once could,its not that you dont want to its just so hard to.but we still want to be involved in thier lives,but somtimes friends and family seem to not want us around and thats hard, so when that occasion arises i make them read letters to normals and then they say, wow!, i am so sorry, ill try to be more understanding and now that i know what your going through ill lay off of the inconsiderate comments about "it cant be that bad"and surely you can go afew days without the narcotics!. if they could only walk a mile in our shoes they would take all thier negative comments back. how long have you not been able to work? will your doctor write u a letter of reccomendation for the ss office, mine did and i applied in an october and had a check in the mail the very next month and was approved for ssdi, my medical records spoke for themselves. it can be a long road but hopefully you dont have to wait years like some people do, hang in there, and keep a positive attitude and stay on top of things and hopfully youll get the help you need from ssdi. talk to you later, gary
  • Thank you Gary. Thanks so much. It helps just knowing that someone understands. I am so sorry that you suffer from this Chronic Pain etc. as well. I am so sorry. I appreciate the advise for my family.

    I am so down today. I have applied for SSDI and SSI and was denied AGAIN yesterday. I don't get it because I have medical records that speak for themselves along with my pain specialist doctor who has supported me in obtaining disability benefits,
    he has wrote a letter's on my behalf stating that I have severe Chronic Pain and other health conditions that prevent me from working. He stated that I would not be able to hold any kind of job because I would miss at least 5 or more days of work a month due to health conditions. I also have a Residual functional capacity report from him and letters from neurologist and letter from psychiatrist ( I had a neuro psych evaluation) all supporting my disability claim as unable to work. Not to mention numerous hospital records.

    The judge gave no weight to my medical evidence or treating doctors but gave great weight to their paid doctors who saw me for less than 5 minutes, did not examine me- even though they claim to, they outright lied about supposed tests they gave me.

    Because I was able to walk to a restaurant in the same parking lot (20 steps or less) as this social security psychiatric doctor and use the bathroom and get a coke with my mom and leave- they don't think I am disabled. I don't get it. Their expert found their was NO job I could do but I was still denied. How can there be NO job I am able to perform but am not disabled for work?
    I am so depressed today. I was really counting on that. I give up. : (
    God Bless all of us who are suffering with chronic pain and chronic health conditions.
    With Love and compassion,
  • naildriver93nnaildriver93 Posts: 35
    edited 08/24/2014 - 11:59 AM
    how with all the reccomemdations from your doctors and you medical files that they can justify not giving you ssdi, it is crazy!, how old are you if you dont mind me asking? they might think your to young but i know some younger than me that got approved, i am 43 and have been on ssdi since i was 38, i never saw a judge, one of thier doctors or had to go to court or a phcyc. doctor, i was approved within a month, my back is screwed up to the point where i could hardly stand for 10 minutes let alone walk.now that im on narcotic medications i am able to do both for an acceptable amount of time,i am so thankfull for that at least. seems to me if i were you i would hire an attorney that did only ssi cases and see what he could get done,i hate it when people like you and i are swept under the rug and they think we should be able to work , untill they have to walk a few steps in our shoes they will never understand.i really feel for you and it can be so depressing, i know, just try to stay positive, i know its hard but do your best em,and dont give up,ill be following your posts and if theres anything i can do , even if its just to vent feel free to contact me anytime.im in missouri and dont know if that matters when applying for ssi as it is federal but i had a smoothe time of it.big gentle hugs for you, gary
  • I'm so terribly sorry that you are suffering like this. I know that insurance (or lack of it) adds so much stress & unnecessary suffering. It's so wrong! A friend is currently going through a similar situation with disability. She has found a lawyer who was willing to take her case with no money upfront. I've heard the process is so much smoother with a lawyer in your corner. I hope this helps you get the care & attention that you so desperately need.

    I've also had friends & family read 'Letter to Normals' & 'Spoon therory'. It's a great suggestion. It really helped. I wish you all the best.
    Osteoarthritis & DDD.
  • pugchaserppugchaser Posts: 1
    edited 09/01/2014 - 1:56 PM
    I am new too, and found this page after doing a search on pain relief. I did so because I did something, a wrong move last nite, and now feel I have another injury both to my neck thru my C5. I can't see my chiro til tomorow and I'm desperate for home remedies til then. But I am quite afraid, as I have a sustained history of head and neck trauma, accidents. I am glad I found this site and forum as I have massive health issues, which despite a new healthy eating habit I've switched to I still have. I'm not even 45 yet. Especially today I feel like 70.

    If anyone wants to xchnge notes PM me. I've had chronic pain and fatigue for decades now.......

  • If there is any chance that you have a herniation or damage to your spine please don't allow a chiropractor to do any adjustments. All specialists (even a chiropractor!) have advised against it. They can cause serious damage! Do you currently see a spine surgeon or pain management doctor? If not I'd make an appointment with your GP & ask for a referral. Living with chronic pain & fatigue they could help. There are advances in this medical field. If you haven't seen a specialist in a while they may be able to help now if they didn't in the past.

    When I have a pain flare I start with a very hot Epsom salt bath. Use prescription or OTC cream, alternate ice & heat, airomatherapy oils (both massage & in a warmer) & a gentle massage, it really helps. Rest & hopefully your GP can see you in the morning. Best of luck. ;-)

    Once you have a diagnosis I'm sure you will find the advise & support of this group as helpful as I have. Living with chronic pain can be so hard. You're not alone. After all these years I'm sure you have so much to offer. See you on the forums.
    Osteoarthritis & DDD.
  • Hi Gary,
    Thank you for the kindness and compassion. I am 43 and I don't know how they can keep denying my disability benefits.
    I have always been a hard worker and have paid into the system all my life. I have had a lawyer on both the claims I submitted. They did not do a very good job for me. They were both those- pay if they win your case lawyers.

    I am on very strong narcotic pain medication as well. I am in a lot of pain every day.

    I am currently appealing the ALJ judges decision. The two main reasons I am appealing on are- by their own rules they have to give majority weight to my treating doctor who supports my claim. They keep giving no weight to my doctor and the other specialist's letters that I have submitted that support my need for disability benefits. Also, they did not have an occupational expert at my ALJ Hearing. It is my right to know what kind of work they think I can do if I am am not disabled for work.
    I have other reasons also but I think those two will make it so they have to reconsider. Those two are against the law and I am taking this to the Supreme Court if I must. I have no choice. I cannot work.

    At my first ALJ Hearing it was determined that there were NO jobs I could do based on the fact that I would miss 4 or more days of work a month (which is a huge understatement). I was still denied disability benefits. I just don't get it.

    I have such a hard time even filling out the paperwork. I cannot defend myself properly. My medical records should and do speak for themselves. IDK- I overheard them saying that my family can take care of me. They have been to my parents house doing their undercover work and I think they may think my family is well off or something which is not the case. We just lost my dad in February due to Multiple System Atrophy and it was expensive. My mom and I may have to move.

    We were really counting on disability benefits for me. I meet their listing on the Liver Failure etc.

    I have not even been able to have a haircut or see the dentist since 2009. : ( that is how broke we are!

    I appreciate the encouragement. Thanks to English Girl and Pug Chaser too! I would love to exchange notes. I have a hard time even signing in on this site. How do I get past those -type in the letters numbers thing? Do I capitalize and space like they show in the box or just type in? I keep having a hard time with it. Lol! : ) what can I do but laugh? I have too!

    God Bless all of us who are suffering with chronic pain and chronic health conditions.
    With Love and compassion,
  • EmeraldEEmerald Posts: 23
    edited 10/05/2014 - 9:17 AM
    Hi Guys,

    I am finding this site hard to use. I am having trouble signing in and finding the buttons to change the page and stuff.
    I may not update often because of this. I get frustrated easily as I used to be so smart. It is so hard for me now.
    I will keep trying but if you don't hear from me right away it is because I can't sign in!

    Thanks for the support you guys. It really does help. Trying to manage these health problems is a full time job.

    Now I have to fill out paperwork to get food stamps. I feel so bad for everyone who is chronically ill and can no longer work.

    Hang in there everybody. Your not alone. God Bless.

    With much love for you all,
    God Bless all of us who are suffering with chronic pain and chronic health conditions.
    With Love and compassion,
  • LizLiz Posts: 7,832
    You just need to put the code in the box and click log in, if you still have problems you may need to clear your browser cache. If the site has logged you out I find I have to refresh the page to read 'recent posts' properly

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • Thank you Liz!
    So you don't need to capitalize the letters or space them like they are shown in the box?
    That is how I am taking it.
    Appreciate it.
    God Bless all of us who are suffering with chronic pain and chronic health conditions.
    With Love and compassion,
  • LizLiz Posts: 7,832
    Your welcome
    Just type what you see no spaces

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
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