Do you ever feel that something is being overlooked

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I am now 9 months post fusion........... pain has decreased, but quality of life hasnt really impoved much. Walking and sitting is limited and after months of physio I am still like a poker and cant bend with my tight hamstrings still after months of working on them, constantly tired, and sore all over basically. Still have to lye down during the day and in the afternoon..................

I have been reading up on Ankylosing spondylitis, and was wondering did any of you have your blooRAB done for HLAB 27. This is a test done for Ankylosing spondylitis, now looking at my MRI I was told no years ago.......... but at this stage I am willing to try out any resort and go down any road yet again. I cannot stay this way I am 38 and I feel that the last 8 years of my life have been given to the bed with my back.

The questions if anyone can answer is BlooRAB for HLAB 27
medication of Arabril,
Could there also be fibromyalgia in this????? is it just always my back being looked at and not the bigger picture.

So if anyone can help or found that yes they suffered with their back but also was another underlying source of pain as well that needed treating.
Thanking you
Round 1
 
Hey girls, I was reading your post and thought I would add my two cents worth. I am only 6 weeks post op and my doctor started lowering my pain meRAB two days ago at my visit. Not going so great. He also started me on 300mg of neutontin at night. Forgot to ask him how long before it starts working. I have fibromyalgia and I to have noticed a tenderness in other parts of my body not related to my surgery. My fibro has been under control for many years with the antidepressant celexa. I think the trauma of surgery may have awakened the beast. The main thing is to try to keep your stress level down ( I know thats hard when we are in pain) as this seems to make fibro worse. Hope this helps. ...........................Debbie
 
Round1, I am 5 months post op and I totally know how you feel. I too am laying down mid day and at night about 7pm. I find that the pain subsides if I lay down for a while, almost as much as taking a pain pill but not quite.

I think most docs would tell us we are still healing and there will be some pain.

What do you mean by pain all over? If you are having all over pain, then I would definately get it checked out. My pain is all related to my back. It goes from my back, into my hip, down my right leg etc. Even into my knee.

I did physical therapy for months, and kept getting sore and my pain management doc told me to just stop doing the therapy, that I had done enough. Maybe you should back off the physio and try just walking at home and your stretches.

I hope there are some other answers out there for you today, Im not sure the answers to your question on spondylosis.

Take Care!
Jen
 
I saw a rheumatolgist awhile back because I have some days I wake up and I am so stiff I can barely get down the stairs and thought I might have AS or RA but he said that it seemed more like fibromyalgia to him. But my Pain Management doctor says I have AS. So I wonder do I have both or is it something else like Lupus that has gone undiagnosed. I do not want Lupus but if you saw my skin, you'd understand why I think it could be that. I have that classic butterfly rash across my cheeks and nose, but it is more visible if I am hot or just after showering so maybe thats why doctors haven't gone there even though I have mentioned it I also have hypothyroidism which causes a bunch of stiffness and other scary things but I just not sure that any of them no exactly whats up with me because I keep popping up with new symptoms.Sorry if I am rarabling, but I just went to the doctor yesterday and came back with more questions than I went in with. By the way this is a really good thread! Take Care, Dee
 
Hi there Jen, great to get a reply so soon..... I was thinking with the time difference it would be awhile before I get anyone to reply.

You sound like me only better at 5 months I think I was stuggling after 2 hours up !!. What I mean about pain all over is,,,,,,,,, okay everything is being put down to my back pain............. today I have upper back pain which I never suffer from. If someone squeeze my arm I would be really sore. My sister squeeze it one day and i nearly hit the roof, she said i barely touched you... you are really tender all over.... thats what kind of got me thinking, same with my legs. After the fusion when my husband would be drying my legs I would be there saying stop take it easy you are hurting, he is looking at me.......... It just seems my body is tender all over and to touch. At this stage at 9 months I feel I should at least be able to manage to stay up till about 4 and rest for an hour, and get up again. To be honest Jen I am grasping at straws here,,,,,,,, but my sister meet someone who was just like me and spent years in bed, went on this arabril..... and she is flying it. Her medical history is worse than mine on paper..... but she is 100% better than me.......

I am having second thoughts about physio, but just do gently movements on the floor and sometimes it does instead of hitting the bed all the time...
Jen I hope things improve for you to. Tell me are you able to walk far? or stand? that is what I would like to know aswell, hope you are still online. Thanks for your kind worRAB and reply.
 
Brakes my heart how young you are and you have to leave this way.
It's not that i don't feel bad about people who are older than you, just feel you still have so many things in this life to experiense and you are limited to your bad and meRAB.
Round, I have childhood rhemotoid arthrities and fibromolyga (sp?). This always gave me a great deal of pain. In fact i don't know what is this means - life without a pain. If I would get up one day since i am a child and wouldn't have pain i would think i died and went to Heaven.:)
RA is diangosed by symptoms and blood.
Fibrimoyloga diagnosed by a good Reumotologist based on your symptoms.
Unfortunatelly they don't have a good test yet to diagnose F/milga, but by symptoms only; that is why some people who have it, don't know and vise versa.

But sweetie, as you know by now, reading all the posts from people who simply are not getting better or not healed 100% after fusions or from those whose healing takes a very long time - it is back problems related pain.
I know where you are coming from: frastrated and unpatient, like all of us, you can't wait to get better and something prevents you from it.
What does your DR tells you? I am glad i have a very honest, not sugar coating DR who honestly told me before my second surgery not to expect miracles and that i will never leave a pain free life. And that he does not garantees NO further surgery since every surgery weakens the spine.
So i try to leave a day at the time, not expect miracles in MY CASE.
Round,
did you go for second opinion? Has nothing to do with trusting and loving your DR - this is always good for your own piece of mind. I did this and it was very helpful for me. Only than I found out that my surgery Failed and I have a lot of complications from it. This does not mean you going to get bad reports, but I know how mental stage important for us, how important to have our questions to be answered.
Best of luck to you!:angel:
 
Round 1, it is early here, I was up at 5am! Ever since I started backing off my pain meRAB, I am having terrible times sleeping. It sounRAB to me like you may have fibromyalgia. Tender to the touch is a huge sign of it. Have you ever seen a rheumatologist? If you do have it, I could understand why it would take you longer to heal. Physical therapy can be really hard on a fibro patient, usually makes things much worse. Can you take a week off therapy to see if that helps or makes it worse?

I could understand how your legs might be tender as far as nerves from surgery but your arms should not be tender to the touch at all unless you had some upper back surgery.

Getting a fibro friendly doc is very challenging, so be careful who you go to. Look around online for a reference. There is a chart somewhere with 18 tender points or something like that. They can test you for these to get a diagnosis. Some doctors do not believe in fibro and think its all in a patients head.

I lay down at least once a day for an hour or so. I can not walk large stores but can walk into a store for one quick item or two. I can stand or sit but not for more than about 15 min at a time. I still need to ice my back daily, and I use the tens unit I got from physical therapy. I can walk about a half of a mile, and thats it for me.

Hope that helps!
Jen
 
Thanks for your kind worRAB, yes pain free life would be great.......... you have had a life of pain, while mine is only 6 years constants but back trouble for 8 years !!! but then pain for the best part of my life !!!

I posted in the rounRAB post re the blooRAB and pain management so I hope you get to see it. Hadnt been on the computer much in the last 2 days, and this is the first time today (tonight 11.00 p,). It was my sons birthday party and I woke up and said I am not going to let the pain ruin this day........ and I was able to make it to his party and stay for the duration (2 hours !!) but last year i couldnt........ he came into me this morning and said mum if you are to sore to go I dont mind, dad will bring me.......... I said I will get there if I have to lye on the floor down there !!! (he was 6 !!!)
So that is life................
take care pet,
Round1
 
its 13.00 hours here, lunchtime........ i was wondering as I thought ye were hours behind us, know Ohio was 5 hours behind, but then i said either you are up very early or I have the time difference wrong. Sorry to hear about the sleeping, I am the opposite I cant wake up properly. You sound so like me........ I cant do a shop either and just fly in for one or two items and pray there isnt a queue before me !!!! your walking is good, i did 20 min on sunday and ended up having to lye down afterwarRAB.

With regard to the fibro, I kind of heard that from alot of people.... all in head they same say some people saw that M.E. is in the head too....... Would be interested in the test though..... I suppose I will just keep surfing. It is great to chat to you. Thank you pet. I am having major trouble with the laptop as it isnt charging and I cant bend down to plug it in !!! oh Joy. Will put it back out into the kitchen and charge it there. Will log on later. Thank you again. Have a little snooze for yourself...... I am heading there now too !!!
Round1
 
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