Disabled and Chronic Pain

Hi all, just come across this website.

I have been diagnosed with numerous different conditions over the years, including fibromyalgia,M.E, Disc degeneration and Neurological function disorder.

I used to work full time but now Iam on 2 crutches and on a wheel chair, I am mostly bed bound most days.

Iam on quite a few different medications to attempt to manage the pain but I experience severe pain on a daily basis and fatigue. Sleeping is the worst due to pain. I don't feel I get any help or caring from my doctor.

Is there anyone else in a similar position?

13 Replies

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  • Claire

    You no doubt have others around you who provide the care and support which your GP seems unable to give.

    I am not excusing your GP but they are under a terrific amount of pressure these days and pain is something which they are not very good at anyway.

    There are lots of us in the same boat as you will find from reading the posts on this site

    Best wishes

    L Jim

  • Yes clairebear1989, I think I know Exactly how you feel.

    I have Everything you have along with Spinal Stenosis, Bone Spurs, Diabetes 2, Blood Pressure, Severe Obstructive Sleep Apnea - etc. etc. etc.

    My body started to attack me a few years ago and hasn't stopped. I sometimes become so depressed and frustrated that I feel like I'm losing my mind because I'd like to think I'm an intelligent, balanced, well informed person but I just can't get my head around how I ended up in this situation.

    The media keeps telling everyone about how Type 2 Diabetes is a disease linked directly to obesity and diet - what they fail to mention is that it is also a Metabolic disorder that can affect people who are neither obese nor eat badly.

    I have refused to succumb to a wheelchair because of my pride and something my father said after his back operation - which left him with paralysis from the waist down. He constantly encouraged us to use our legs and bodies to the best of our abilities for as long as humanly possible.

    More often than not, what appears to be a 'non caring doctor' is just a facade. I come from a family of doctors and can confirm that they are usually just stumped by what they also struggle to cope with (or understand) and like Social Workers (I know quite a lot about this), do whatever they can to stop themselves taking their work home with them and burning out. Many even feel like failures when they can't provide any effective help or cure.

    I loved my life pre 2009, I loved and was good at my job. I miss the person I was prior to my personal 'invasion of the body snatchers' sequel.

    I live in the hope that none of this is in vain - my old man used to say, the point of your personal experiences is to share what you've learned with others because when we know better, we do better and hopefully, in some way, contribute to finding a cure or resolution. Wise words.

    In the meantime, love all those little things that distract you from your pain, learn new things about yourself, your conditions and others, look at things from different angles, develop a Pollyanna Complex (much to the annoyance of those around you) and most of all, BE KIND TO YOURSELF!

    Let's hope that eventually, our personal journey will be an inspiration to someone - like my dad's was to me.

    You may not know it yet but you're still here, you're doing great and your non caring GP probably has a grudging respect for you in the 'there but for the grace of God' kind of way.

  • Hiya. I was diagnosed with fibromyalgia and complex trauma history (too many injuries over the years) apart from various pain Meds and amitriptyline no one really gives a toss. I vary Meds myself according the pain levels. I am full time cared for my husband and am helping look after my disabled parent who are in their 80's and am at present sorting respite for a friends son as his social worker is a waste of space. Some days a diagnosis of Fybro seems like a fob off. Stick with it, do what feels best for you and be persistent. If you get no joy from one GP is there another you could see? I don't know if I've been any help but I really do empathise with you. Try to stay strong and do what feels comfortable for you. Try to concentrate on what you can do now not what you used to do frustrating as that may be. You're in my thoughts 🙂

  • Hi Claire :)

    I just found this site and joined yesterday, so I am right there with ya, my fellow newbie! :) I too have struggled with chronic pain for the last 14 years, thanks to an Orthopedic surgeon with a God syndrome :( I'm not sure which is worse....being upset at our own bodies for failing us so terribly, or in my case, being upset with another human being for causing all of this :( I walked into that Dr.'s office taking an occasional Tylenol with codeine. After 2 surgeries, I have been on Oxycontin ever since.

    I have worked since I was 14, so being without a job has been hard for me to adjust to as well. I feel pretty useless most days. It is not a feeling I would wish on my worst enemy. I'm not sure where you are located at, but I am in the US. I hate the fact that it is becoming harder and harder to even find a Dr. who will take a new patient on, who has chronic pain. As if we didn't have enough to deal with in our own lives! It has always been hard to find a PCP for me. Every Dr. office that I called would go the same way....I would spend a bit of time giving them all of my personal info etc., to make an appointment, then they would ask what meds I was on. I always saved the pain meds until the last, but it didn't seem to matter. I was turned down by at least 15 offices. One office told me that they couldn't take any more CP patients because they had reached their limit...?? LOL I didn't know that there was a limit! I was extremely lucky (finally!!) and I located my old PCP, who saw me and wrote my pain meds right after my first and second surgeries (6 weeks apart). He had moved away from my city, so I hadn't seen him in 5 or 6 years. I almost didn't make the appointment though because his nurse called me to discuss the pain meds, and informed me that their group of Dr.'s had decided that they would not write any more than 3 - 10mg Oxycodone, with no more than 100 pills per month. I explained to her that my current dosage of 4 - 15mg oxy's didn't really control my pain, so how did they expect me to basically cut my dose in half? Talk about depressing! Thankfully, he remembered me and my issues and didn't ever say anything about their so called limit. He has tested me for Lupus among other things, and is still not able to diagnose my current issues, which are extreme muscle fatigue and soreness, every joint in my body aches and there are some days that I can barely walk at all :( He is now sending me to a Rheumy...that I can't get in to see until Oct 20! UGH He started me on a new pill (which brings my RX's to 6/month), Sulfasalazine. I've been taking it for almost a month and can't really feel any changes.

    Are you able to find another Dr., to one that has a little more empathy? I just wanted you to know that you are never alone :)

  • I have just come across this site. I am in empathy with you

    My chronic pain started in Nov 2015 by Feb 2016 I would be willing to do anything to loose the right arm. I was just swallowing pain killers 24/7 if I get 3 hours sleep I'd say that's a miracle.

    My writing has turned into sprawls I've had 3 osteoarthritis appointment cancelled due to lack of consultants at my hospital.

    I cry myself to sleep due to the pain. The family do not understand my frustration. I go to sleep in pain I awake in pain I move around in pain. I've been feeling depressed suicidal my GP. Is no help I've been to my emergency services 5 times in 3 months they say it's for my GP to address but this was not happening.

    Frustrated I went to a walk in clinic at my GP who took the time to explain that I've been suffering from.a frozen shoulder and has arranged blood test xrays. My question and frustration is why has my GP allowed me to suffered and ignored and given access to more information for so many months.

    I feel a sense of relief just knowing it's not my imagination and maybe I stop wandering around aimlessly. This won't stop the tears but there's now hope.

    Additionally I had to lodge a complaint with the practice management at my surgery stating access to care and attention I received a reply staying I've seen the GP 11 times in 6 months so there's no case to complain I've actually booked a face to face appointment for next Thursday to discu8this as I felt her response has been unjust as referrals were not the answer.

    Why could he not have made the same diagnosis as the locomotive doctors 6 months ago. I feel I would have retained some firm if sanity.

    There is light at the end of the tunnel.

  • UGH! 3 cancelled appointments? Bless your heart! I so know how you feel in regards to Dr.'s. I probably wouldn't have been so upset with the 2 that caused all of this to begin with, had they not tried to conceal the root cause of my extensive nerve damage. My life was irreversibly damaged after the first surgery and it's not gotten any better since.

    My husband hates it when I cry....so I try my hardest not to break down in front of him anymore. It still happens though. Both of my shoulders are now affected. Because of the surgeries and a broken collar bone on my left side, I am stuck sleeping on my right side only. It is torture to sleep on my right shoulder now, but what choice do I have right? :) Please let us know how your appointment goes!!

  • Glad you're seeing a rheumatologist. Don't be surprised if you are diagnosed with fibromyalgia. Should that happen there is a great Fibro forum here on healthunlocked. Plenty people to help and support you on there x

  • Yea, that has been at the back of my mind for several years now. Things really got bad while I was living in a duplex, while I was single for 3 years. I found out a few months before I moved out that there was black mold, probably throughout the entire place, and more than likely for the entire 3 years. It started out with really sore muscles, that were also really weak. Then I was having neurological tics, intense brain fog etc. I didn't seem to have any respiratory issues though. While researching all of the medical problems involved in toxic black mold, I did read where there are a lot of folks who get diagnosed with Fibro - when it could actually be from breathing in the toxins. I held out hope that I was going to get so much better once I got out of that environment. Some of the neuro stuff really got better....and the rest just stayed the same and now, has gotten worse. I had been taking Wellbutrin to help me quit ciggies. Since my PCP had now kind of thrown up his hands....I started researching, again LOL Some of the issues I was having also happened to be among the "rare" side effects of that drug. I went off of that drug and things evened out a bit. And now, here I am, back to where I was, if not worse. It is enough to drive a person mad I tell you! LOL

  • Lol. Yep, I can well imagine. Hopefully you will get a decent rheumatologist. There are still far too many who believe Fibro is all in the mind. When I mentioned that to my mum she said "that's a hell of an imagination you have then" lol. I hope for your sake it isn't Fibro, but if it is then at least you don't feel you're going mad. Catch 22, here we go lol.

    I'm interested in the drug for giving up the cigs though. Did it work? Did it kill the cravings? Must find out more about it. I'm not ready to give it up yet, but I'm gathering info.

    Hope you get an answer soon xx

  • Hi.

    Yes I also have Chronic Pain 24/7, like you I had to take early retirement due to my ongoing health issues.

    My Chronic Pain started in 2005 following Radiation Treatment that went horribly wrong !!!

    I have also had to get an electric scooter due to my continuing health problems.

    Yes I'm also house/bed bound currently due to my ongoing disabilitys.

    I'm also on nemourse medications for my pain which seem to have only a very very small amount off help currently.

    Please let me know if I can offer you anymore help & support ???

    Steve.

  • Hi, have you had an operation for the degeneration of the disks such as a fusion ?

    Reason I ask is that when my MRI showed that my consultant explained that this can range from wear and tear to bone on bone.

    May I ask what the reason for being in the wheelchair ? Have you been specifically assessed as needing one by a qualified OT/ physio or did you buy it on your own ?

    Obviously you have to follow your own Doctors advice, but does this not mean your getting less use of your muscles - often with fibromyalgia even a short walk can help - even if that is a couple or car lengths down the road and back; and each week you gradually build up to walk slightly that bit further.

    My pain is mainly abdo/ gynae but do have experience with chronic back pain/ fibro.

  • No

  • Hi Claire

    Is that Davys Claire ?

    Might have you wrong, if not, its Jules here

    Let me know either way

    Jules

    x

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