Hello all,
So here's my question. I've been having lower back pain since January -- it radiates on both sides and is TERRIBLE in the morning and not good all day long. At first I assumed it was muscle strain. I went to the chiropractor. After months, no real relief. I tried physical therapy - same thing. Finally in August I told my Rheumy about it and we did xrays. He found some arthritis in the lower back and then said the muscles were all cramped and tightly spasmed. I had steroid injections - - that was great - - for three weeks! I had the injections again -- great again - - for three weeks. Finally last week I told my PCP about it and he ordered an MRI. I had that yesterday and guess what - -- my back looks beautiful. Now, who on earth is going to believe that I am literally in pain and not sleeping? While that MRI is a great report, I'm in tears because I'm in real pain. My best friend, a neurologist, has been telling me she thinks I have fibromyalgia for about a year. I brush her off because I don't want that disease :). Also, I have not had the official tests for that. My question is this - - how do you know if my pain is sjogrens related (since sjogrens can cause pain that doesn't show up on xray in the joints) or fibromyalgia? I realize that the bottom line is it doesn't matter what you call it but I'd like to hear from you - - - When looking online, I do have most of the fibro tender points but unless you touch those areas, I have no pain other than in my lower back (sides and front).
Voiceteacher
Your pain is real! It sounds like your do have fibromyalgia but that is not your back pain. Most back pain can be released with a couple pelvic tilts per day, muscle stretching and a little reflexology.
That pain can be referred pain from just about anywhere on your body,, you mihgt have problems higher up in the spine doing it,, or a nerve impingement
I can never really tell. I have Fibro and SJS, plus numerous degenerative problems and bulging discs in my back and neck. I think they all gang up on me to make it worse!! ;D
KellyG
You probably do have fibro. It could be arthritis as well. I have both issues with my back. My rhuemy said Sjogren's patients usually do develop fibro. My orthopedist said there is an area on your back where your hips connect to the spine area that doesn't respond to anti-inflammatories. She cauterized the nerves there to stop my arthritic back pain. Your nerves can grow back though.
I have been having the same problem. It started before we knew I had sjogrens. Doctors got to the point that they wanted to do exploritory surgery. I said no way and just stayed home suffering. Eventually it would get better. Now that I know I have Sjogrens , I just go to my Rheumy for help. He said I do not have Fibro, but will feel like I do. So, I can see how you find it hard to know if it is your fibro or Sjogrens. Which ever one it is, I hope you find relief soon.
Luna
There is no "test" for fibro.. it is a diagnosis of exclusion. Why not get a test for Lyme disease instead? I know tons of people who were dxd with fibro (myself included) which turned out to be Lyme and coinfections.
Have you tried frequent massages??
I would like to encourage you to smile because your not alone.. I have suffered with this crazy back pain for so long!!!!! So I would like to tell you what I have done in the last 30 days that even I can't believe is working!!!!
1. Seen a holistic nutritionist. My diet has been modified so as to not allow my "gut" to cause inflammation that puts pressure on my spine and nerves. (ok crazy but it's helping. First 3 weeks only protein and root veggies.. I am now 100% glutten free now also. It makes a difference trust me!)
2. I am doing something similar but different to physical therapy... I am being professionally stretched.. Not massage but stretched. Exercises I would do in the gym I can't do anymore so a rehab therapist is doing the work for me. This has made a world of difference for me. The hope is in about 3 months I can do some by myself.. But we live in such "normal" pain that we don't notice how tight our muscles have gotten sometimes..
3. I have added many new vitamins and the doctors have me on 280 billion probiotics, silver and a turmeric powder drink (for inflammation)
I share this to tell you I am retired army and been very active and ended up on a walker 30 days ago. All this has gotten me on only a cane this week.. I don't know if you have a anything like this where you are.. but I hope something breaks soon for you...
Blessings.. 12love
Quote from: 12lovehim on October 26, 2011, 04:44:07 PM
I would like to encourage you to smile because your not alone.. I have suffered with this crazy back pain for so long!!!!! So I would like to tell you what I have done in the last 30 days that even I can't believe is working!!!!
1. Seen a holistic nutritionist. My diet has been modified so as to not allow my "gut" to cause inflammation that puts pressure on my spine and nerves. (ok crazy but it's helping. First 3 weeks only protein and root veggies.. I am now 100% glutten free now also. It makes a difference trust me!)
2. I am doing something similar but different to physical therapy... I am being professionally stretched.. Not massage but stretched. Exercises I would do in the gym I can't do anymore so a rehab therapist is doing the work for me. This has made a world of difference for me. The hope is in about 3 months I can do some by myself.. But we live in such "normal" pain that we don't notice how tight our muscles have gotten sometimes..
3. I have added many new vitamins and the doctors have me on 280 billion probiotics, silver and a turmeric powder drink (for inflammation)
I share this to tell you I am retired army and been very active and ended up on a walker 30 days ago. All this has gotten me on only a cane this week.. I don't know if you have a anything like this where you are.. but I hope something breaks soon for you...
Blessings.. 12love
Wow! Yay for you! You go girl, um, sir, er ma'am!! I'm a military brat. It was always yes sir, no sir, thank you sir. But even my mom was yes ma'am, no ma'am, and thank you ma'am. I never had the opportunity to address a female military officer (??)
Turmeric really saves me. Can't tolerate the pain otherwise. I'm also gluten free and I agree.. that helps a LOT! The fewer carbs I eat, the better I feel.
after all these years of fibro being labeled a yuppie disease,, I have a young neuro doctor that says fibro is a wastebasket Dx,, now I am not saying it is,, becasue theres sure alot of people suffering from something,,
Fibro is a real disease. They are just starting to understand just what is going on with it. They have found that the pain can be found in 18 trigger points and that people who suffer from this disease usually see some improvement with the antidepressants.
Fibro is a bunch of symptoms and pain caused by the body's interpretation of stimuli. Actually, I don't know if it is always outside stimuli or if there is an internal mechanism that is at work. The nerve endings in the body are really in high gear and react with the very strong pain response.
It is sort of like the nervous system gone nutz so it will probably turn out that it is something triggered abnormally in the body. Or, it could be caused by a virus??? Not all that impossible. All these complicated ailments are really the pits. Irish
Irish... I know LOTS of people who were dxd with Fibro and later found out it was Lyme disease. Makes a lot of sense.
Hi Voiceteacher,
Is it SJS or fibro I can't say as I'm not in any medical field, but I sure do feel for you! Like the others have mentioned, no one knows much about fibro including the doctors.
I know that using Lyrica has helped a lot, but I still get weeks where something or another hurts so bad and for so long but then will just stop (no rhyme or reason).
Have you spoken to your rheumy about it? If you have, what did he say about it? Mine just shrugs his shoulders, and asks me if I need the Lyrica increased.
Hang in there and I hope that your pain ends soon!
Take care of yourself, okay?
Patze
thanks for all the responses! I am feeling quite lucky today. After writing to all of you, I sent an email to my rheumy (we have a patient portal that he actually answers!!!) I explained my frustration about the MRI showing nothing and feeling like my pain was not real. He said that although my MRI was fine, my xray absolutely showed stuff that was not normal - - not terrible but not normal and could certainly cause pain! He prescribed pain meds for a few months in hopes that the pain will settle down - -he feels it's due to inflammation and spasms from the arthritis that is in my back. I haven't taken all of the meds because I don't like to take pain pills but I've taken enough of them that now I'm sleeping!!!! Also, during the day, the pain is much better. Today I woke up and feel almost OK!!!!! I'm hopeful that after several days/weeks of reducing the inflammation, it will get better -- that's what the Rheumy hopes too. He's also the rheumy who will treat sero negative sjogrens. At this point, he feels most of my exhaustion is due to lack of sleep due to pain - - I think he's in his early 60's and I"m hoping he has no plans to retire!!
Voiceteacher
I agree that fibro is probably real,, since its recognized as a disibility by social security, wonder what it was called a 100 years ago,
Quote from: Patze on October 27, 2011, 04:56:12 PM
Have you spoken to your rheumy about it? If you have, what did he say about it? Mine just shrugs his shoulders, and asks me if I need the Lyrica increased.
-
So why not try to cure it? If it is caused by a bacteria, you can get well!!!
Hi Jazzlover,
Ah, if it were that easy to "cure". I've been on a ton of antibiotics the last few years and one for a long period of time so I don't think that in my case its caused by a bacteria.
I'm curious, and if you don't mind my asking, why do you believe SJS is caused by bacteria?
Take care of yourself -
Patze
SITH-100 years ago it was probably called rheumatism.