New to forum, feeling down and out by Chronic Pain

[keephurting]

Hello,
I am a new member and wanted to share how and why I need support right now. I have lived with Severe Fibromyalgia and Chronic Fatigue for over almost 12 yrs. I don't know if others have progressed but both my illnesses have.

Furthermore, for over the past year I have had the worst pain that began in both my buttocks(embarrassing to say) making sitting very uncomfortable even after a few minutes, which proceeded to move to both my hips, the outside/top of my thighs, with muscle spasms and has caused leg weakness to the point that I fell in the bathroom, after slamming into walls as I had no control of my legs. I have had MRI's CAT SCANS, and a couple X-rays with nothing found but a fracture on my tailbone that was healing or had healed,(they couldn't tell).

I have seen rheumatologist, physical therapists, neurologist, orthopedic spinal doctor, rehab doctor, pain doctors and every one has given a different diagnosis which turned out to be wrong. I am now scheduled to see a neurosurgeon whom I think won't find what's wrong as my hope has been disintegrating. After that another pain doc. There has not been any medication that helps with this pain. I was hoping that others maybe have dealt with something of what I am describing or a similar situation. I meet all the criteria for Sacroiliac dysfunction, but when they injected me, nothing really changed so I am very confused. Thanks for listening,
Kristine

 

[Forgetmenot]

Welcome.im sorry u had such a rough time.so many of us just don't no what to do to cope.i myself have to go see a dr who I don't no , to tell me if I can have pip or not.im not looking forward to this.not many ppl get it.
I have started getting the pain in the legs .your not alone. What drugs have u tired?.

 

[keephurting]

Thanks for your response. I have increased my neurontin to 1200mgs and that did ease my pain a bit, so I no longer was practically crying when I couldn't get comfortable in any position. I am on Cymbalta for fibro, Tramadol, lidocaine patches, Klonopin recently Doc added Trazodone as my lack of sleep had gotten so bad. Tried Lyrica years ago when it came out. It worked the first week and I felt normal again and then second week it stopped so Doc upped it to highest dose and nothing. Was on Elavil for pain too but she took me off due to the two sleep meds, and lastly on occasion hydrocodone for my Degenerative Disc Disease in my back and neck. I only take it when I have to stand for a while as the pain gets excruciating. .I take thyroid meds as my thyroid is on the lower end. Nothing has helped. It really scared me when a drug like hydrocodone doesn't touch it. What is PIP?

 

[Crispy]

Hi Kristine.
Although I haven't suffered for very long, my situation sounds very similar to yours. Unfortunately I can't offer anymore advice as I'm still in the "pass from specialist to specialist" phase, all being baffled. Before I go onto my story, can I just ask, has anyone ever discussed the risks of taking tramadol and gabapentin together with you? I had a similar issue with a concoction of meds, my friend who is an anaesthetist went nuts when she found out and advised me to speak to my Dr as theres a serious risk of serotonin toxicity which can induce coma. I spoke to my pharmacist and he had to look it up but then it was backed up, he panicked and wouldn't give me my meds until he had spoken to my doctor. Needless to say, my doctor swiftly swapped my meds. My friend also has been very insistent about never mixing either gabapentin or pregabelin with tramadol, worth asking about it if you haven't already.

So, Im new to the site. My story only really kicked off nearly 2 years ago. At work (Im an RVN) running ragid as usual, then suddenly drop to the decks and have my first ever seizure, completely out of the blue. My life has just spiralled downhill since then. Basically, after every investigation under the sun from my neurologist; MRI, 24 hr EEG/ECG/BP monitor, numerous ambulance rides after these "drop attacks", they diagnose me with Dissociative Seizure Disorder. Its exactly what it says on the tin, my mind dissociates from my body, I lose all postural tone and I'm unable to move, not even swallow, I look like I'm having TIAs. It got so bad that I was having 3-5 of these a day, whilst still trying to work. I used to get pain associated with the fog like warning I would get pre ictal, then after about 9 months, the pain was constant, after further testing, I was diagnosed with Fibromyalgia and started on my first cocktail of meds. (gabapentin, amitriptyline, duloxetine.) With the pain getting worse and worse they increased my gabapetin until I was on 2.7grams per day, thats 900mg three times, plus everything else. The side effects were hideous and I was still in pain and having seizures. Confused, they sent me for a spinal MRI as a lot of my pain is neurological in nature, but not all.
MRI results only came back in august, showed a severely prolapsed disc C6-C7 which required urgent surgery, plus from L3 down the rest of my spine, all my discs are bulging. I also have spondylosis.
Was sent to a neurosurgeon urgently to organise surgery, had a seizure in the consult, terrified consultant, he even ran off to try and find my neurologist (Im fully aware during my attacks but can't respond) after that he wants to investigate further as he thinks its too risky to do surgery at the moment as I'm nowhere near stable, plus, he could only offer me a 5% improvement in my overall condition by fixing my neck.
I'm seeing the pain clinic again next week, although my surgeon has told me I can't do physio? He wants me to have nerve root injections then reassess me in 6 weeks for surgery. I am also awaiting an appointment with a rheumatoidologist, as thus far, everything has been dealt with by different specialists within the neurological sector.
I am now into my 6th month of being signed off work, I have been advised by HR to resign before they start procedures to sack me. Theres no way I can work. So far today, alls I've managed is to walk downstairs, make a drink, then I've been in and out of sleep on the couch, with absolutely no energy to even lift myself up. My pain is still constant, Im now on pregabelin plus sertraline, but I still have no quality of life. I wish I knew how people can still get to work with this condition? I can go a week without even leaving the house. Getting showered and dressed drains everything out of me, so when I have to go for appointments, I'm completely ruined for days afterwards.
I'm devastated to let go of my job, my profession, the career I've worked so hard on. I fear that letting go, is accepting that I'll never truly be able to go back. Theres just no way, its so physical and mentally challenging at times that even the fog would stop me even if my pain was controlled. I started getting PIP in about march, for my seizures, then about a month ago I applied for ESA despite CAB saying I wouldn't be eligible. I was and have been getting a basic payment since, but have my assessment next week when they can potentially take it away. CAB advised me to re-apply for PIP as Im on the lowest level and my situation has worsened. Still waiting to hear from them but again, I'm risking losing it altogether.

I read different forums and I feel like other people have learnt to cope so much better with it. I need to, I'm becoming so isolated and lonely, I need to get some sort of life back. I was the life and soul of the party before, literally. I was that annoying out going girl that seemed to somehow juggle an amazing social life with working crazy hours in a specialist hospital, now, I can't even make myself any food.

I would so love any advice, tips, anything from seasoned sufferers. PS: I have taken pretty much every supplement at huge doses, but found that it didn't help the IBS symptoms, so had to stop after about 10months.

Chrissie

 

[Eyesup]

Welcome�� I'm also new. I was fine ally diagnosed last week, from the sound of it we have been through all the same med. test/docs (I should glow green)! My neurotin of corse will take awhile to c if effective but on Friday my doctor prescribed voltaren...everyone responds differently but it has been a God send for me. I'm by no men's pain free and my vision is rotten, but my muscles are tolerable. I would be in tears if not for it. Ive also found warm baths and heating pads quite helpful. May you have a restful night. Gentle hugs

 

[Forgetmenot]

Pip is an old word for benefits.today I feel like I'm 190. I'm fed up and in pain .but I keep telling myself that I have to push forward.
I live me my own head on days like today.i talk to myself and tell myself what I can and can't do.
I also love miss Marple so I put that on my I pad as I slowly do my jobs.detraction is key to getting through a day for me.

 

[keephurting]

Hi everyone,
Thank you so much for your responses. I was feeling a bit lonely as friends don't live near me anymore; as I had to move to a house without stairs, as I kept falling or tripping on them and now live 5 houses from my mom in a manufactured home n the country. Much easier but again another loss, my friends, my home, the pool my husbands hard earned money bought for me to help my pain and to exercise in, all gone. I too hated having to quit my job. It was my identity. I had just received a promotion as a Clinical Director of a women's residential addiction program. I added a trauma segment to it, which was very successful and was about to start a children's program. I was told to get back to my old hours, early in the morning when pain was the worst or step down. I stepped down to Addictions Therapist and then they fired me as I was sick too much. Then went to work for my old boss, doctor said your getting worse, I fought her went part time and then had no other option but to quit, as pain was unbearable and go on SSD. I cried and cried.

There are many losses we must succumb to with these illnesses and that's the first step; grieving. When I was diagnosed I cried and cried. I got angry, why me? Now its part of my life. I had to come to accept it or I would be "stuck" in a pit for the rest of my life. But, when you are first diagnosed you need to go thru the stages of grief, its normal. Every Time we have a loss because of our illnesses we need to let ourselves grieve, its just my opinion.I figured that there are others who are suffering worse than I am. So I use that to cope. Having this new Chronic Pain Condition is really reeking havoc on me. I can't do anything without pain, so I feel like I did when I first got fibro and CFS.I am so sorry Crispy about the seizures, how very scary. I hope you get some relief and the right treatment soon. I don't know if surgery is worth it if that isn't going to help much. I too have degenerative discs in neck and low back. I have spinal stenosis, osteoarthritis in my back and spondylosis. It keeps getting better and better. If we can't laugh we'll cry as Forgetmenot said, we have to keep moving forward.

Don't feel ashamed if you have to go on government assistance, you have a true medical condition that doesn't allow you to function without pain. We have real diseases, maybe someday they will find a cure but for now we have to do what is best for our bodies. Gentle exercise, I can attest that if you go to far with exercising hard, you will permanently pay for it. I did. I was working out 30-40 minutes 2-3x's a week on a high incline and that's when the napping started as I was wearing my body out and I haven't regained that energy ever since. Read that a Doctor specializing in CFS said if we push our bodies to hard, we will not bounce back but stay permanently in that current state of exhaustion. So we must listen to our bodies, it has taken me a long time to do that and I still struggle.

I too was the type of person who worked full time, exercised 4 days a week, went out with friends every weekend and cleaned the entire house in a day. I can't do anything without suffering after with this new unidentified illness. I try to do things that I didn't have time for when I was working, as Forgetmenot said she watches a favorite show, I love watching House Hunters International, it takes me to other places that are so interesting, maybe reading, some sort of hobby that doesn't cause you pain can help. I did puzzles till they hurt my neck too much. Eyesup had a great idea about baths and heating pads, I would stand in the shower for hours if I could. Sometimes ice helps me if there is inflammation like my new disease shows. I heard magnesium helps and have been on that for about 5 yrs and without it I am in so much pain. It may help some of you. Everyone is different in terms of what helps. I am so glad to meet all of you and look forward to helping and supporting one another. So glad I found this forum.
Best regards

 

[Blueeyes1]

Hi Kristine! I have been diagnosed with FMS/CFS/CPS for 3 years now and the pain in the back, hips, butt, and legs has been getting significantly worse. When I went to Physio just lately, I really complained that it is getting worse and I wasn't sure why. I am very flexible and my joints weren't locked even though it felt like it. I exercise regularly and I am not over weight, eat healthy, and very flexible. He checked me out thoroughly and said that my soft tissue was weakening. So, some of my soft tissue was on "vacation" (not working) while the other soft tissue was working harder to compensate for the soft tissue that was on vacation making it fibrous and knotty. Hence.....more pain and weak. Unfortunately, it goes with Fibro. You may want to see a Physiotherapist as they should be able to help. I go every week for one hour and have been for 1.5 years now. Sheri

 

[keephurting]

Thanks Sheri,
Did this come on all of a sudden? Tell me more. Can you sit? After five minutes I am feeling numbness and pressure and achiness in my buttocks. I can't get comfortable any which way. Mine came on suddenly. I stepped off a stool wrong and then week later my bum started aching and it went around to hips, thighs, and even the groin area. I meet all the criteria for Sacroiliac Joint Dysfunction. I did so much research. I have every symptom couldn't believe it and its where my sacrum and iliac bones are that the pain seems to be stemming from. According to my former Pain doc I have sacrum dysfunction. I did see a PT person and she said my sacrum was loose and he was right. Went to a physio and she was useless. Didn't do anything, went along with a diagnosis of Coccydynia. I have had horrible luck with Doctors. This all started as 5 or 6 different diagnoses. But docs clung to the Coccydynia one. Found an old fracture or healing fracture on my tailbone. No one looked at anything else.

Was sent to Neurosurgeon yesterday and he was so rude, was supposed to make sure that none of the hidden nerves that don't show on MRI were causing this. "Why were you referred here?" he says. I wanted to say, don't you have the referral, can't you even read it while the nurse was spending time testing me. I couldn't do the heel/toe test, it was really painful. Then he tells me that if it is leaning towards Sacroiliac Joint issues, I will get better. I said I have had these symptoms for 15 months and am getting worse" I then tried to say I have had a serious fall and he didn't even listen. "Yeh you will get better." that is what he says. Then when I tried to discuss if any nerve issues could relate to this, he doesn't answer directly and says nerve fibers could be causing problems, I asked him to elaborate and he say nothing! Then he says I won't ever get better.? He was so condescending and talked out of both sides of his mouth. He said the only one who could help me is a Pain Management Doctor, he started talking about how great my previous pain doc was. I said not really. He may be right about my sacrum, but he didn't do anything about it. He doesn't manage pain, he just shoots you where other docs suggest, doesn't make a plan, nothing.

So this neurosurgeon went on the web and looked up where I was now going to go for Pain tx and said "the Doctors last name isn't even on here, I don't know if that picture is of him". Who Cares! I couldn't believe it. Hello I wanted to yell can we focus on my nerves.

It was a waste of time and I so immediately after I had my mom drive me to my old fibro site of Physical Therapy and set up eval to restart PT. It seems these days, at least for me, I have to find the answers myself , as the doctors don't want to be bothered and refer me to other doctors that don't have anything to do with my problems or say we don't do that kind of problem.

I am so frustrated. The one PT girl I saw knew what she was doing, she said I needed pelvic floor treatment, but the exercises she gave me caused me to wake up in the middle of the night screaming as a knife went thru my back, that's what it felt like. So since my other PT specializes in fibro, I think they maybe, hopefully can differentiate fibro vs the pelvic floor or sacrum issues. I just want some help you know? Sheri can you tell me about how yours started so I can maybe figure out what is fibro and what is pelvic issues. My hips burn and I never experienced that as fibro, nor falling and losing all control of my legs. I was told that isn't fibro. This is so hard to figure out and its on both sides. If you want to PM me that would be great. Thanks for your feedback.
Kristine