Common Variable Immunodeficiency Support Group

Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.

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Lower Back Pain?

Hi!

I was wondering if anyone else deals with crushing lower back pain that feels like a combination of nerve and muscle pain. It is pain that even comes in the middle of the night and wakes me up and makes me have to take painkillers so that I can get back to sleep (Advil does it). It also comes in goes which is odd....sometimes a bad week...sometimes a good week. I can't tie it to anything physical that I might have done (I have a BMI of 18, active but don't do any sort of lifting etc.) so I was wondering if this might be yet another weird CVID thing? I have spent a fortune on chiropractors and accupuncture, and nothing seems to help....plus they are all stumped too and can't seem to figure it out. At times it feels like my lower back is going to collapse, so that I will fall. And then I go for 2-3 weeks with absolutely nothing...nada.

Thanks and have a good day everyone!!!!

Replies

TinaMichelle
TinaMichelle

I have nighttime back pain but I have spinal stenosis. Have you seen an orthopedist or a chiropractor?

Here is hoping that you feel better soon.
deleted_user
deleted_user

I too have had weird lower back pain, and most recently severe hip pain, with no apparent cause. It also feels like a muscle/nerve type pain, and can be quite debilitating. I feel for you.

My recent trip to the doctor for the hip pain, and issues with walking because of it, had him sending me for an x-ray. I knew it wasn't bone related, and I was right. Nothing broken, or fractured, and no apparent reason why it started to hurt in the first place.

The only thing different that I had been doing was taking a sulfa antibiotic for a sinus infection that I had. I inquired as to if this could be a reaction of some sort, and he said it would be extremely rare. He then started asking me if I had been tested for lupus in the past, which I had, and the tests were negative.

When I got home, I started looking up reactions to sulfa antibiotics, and found references to this type of antibiotic bringing out developing lupus, or potentially causing lupus flares. Scary! I hope that isn't true for me. I have enough problems with the CVID issues.

Hope you are well.

Barb
LightLines
LightLines

Thanks TinaMichelle and Barb!

I have been seeing a chiropractor, but he is at a loss as to what is going on. He treats me, I am ok for a few hours or even a day, then it all comes back again. The weirdest part about it is that it comes and goes...sometimes it is there for a few days, then it disappears. Just as suddenly, it reappears for no rhyme or reason. The lupus connection is interesting.. in the summer in particular I seemed to have a host of classis lupus symptoms, but my ANA levels were normal (Rheumatoid factor was a bit high though). I am seeing a new specialist where I live now on Wednesday, so I am going to mention this to him. I hate to be cynical, but I bet it is part of the CVID somehow...another fun aspect I suppose.

Have a great day!
deleted_user
deleted_user

This happens to me a whole lot, but usually when I'm on my menstrual period. It also happens when I have constipation. I use an electric heating pad (using it right now!), and that works well, especially with some ibuprofen. I also have a very serious nerve condition with my occipital nerve on the left side that has caused a lot of pain throughout my body, so that might be a factor.....have you seen a neurologist? It might be worth it, especially if you think it could be nerve related.
deleted_user
deleted_user

Oh, I wanted to add, I also saw a chiropractor since I was young, but they never found out about my nerve issue. Chiropractors aren't usually very good at that....they can be excellent with a skeleton, but not necessarily the nervous system. Reading your posts again, I really really would recommend seeing a neurologist. I waited too long to see one, and now my condition is horrible! If you did have a nerve problem, it would probably be different from mine, but get it checked out, for sure.
LightLines
LightLines

Hi Ariface, thanks for your suggestions! I am definitely going to mention this to the new doctor that I see tomorrow (assuming I am well enough to get myself there) and see if he thinks I need to see a neurologist. It is definitely nerve pain, no question about that in my mind! I do Ibuprofin and heat as well, but I am getting worried because sometimes the pain wakes me up at night and I need to take it even then. I feel like I have been taking far too much Ibuprofin lately, and thus need to get to the bottom of whatever it is that could be causing it.

Have a great day!
deleted_user
deleted_user

Sure thing! Let me know what your doctor says!
deleted_user
deleted_user

Good luck- I too am interested to know what the doctor says b/c I have had back pain too but was told it was bulging discs.
LightLines
LightLines

No update I am afraid...we didn't get to it in our first meeting. However it is on my list, so I will be sure to raise it and post it as soon as I have discussed it with him.

Have a good day everyone!
deleted_user
deleted_user

Lightlines, I suffer the back pain after I have sat for a while, and I really have it during my transfusion. I have asked the nurses to slow the infusion to 125cc/hr which really helped with the pain. my biggest complaint is the restless leg problem some nights I could just keep stabbing myself with a knife in the legs just to change the pain. I hope you get some kind of answer, pain is so subjective and hard to understand some people I treat can have bullet holes in them and never once complain of pain other may have a fractured toe and feel the worse pain ever. I would hate to be a doctor in todays setting with all the DEA regulations concerning pain meds. I know the DEA is watching EMS services hard to insure we are keeping to our protocols and watching out marcatic usage with Pt.s, but most of us know who our drug seekers are and don't give them what they want.
I have IBS on top of the CVIS and when I have a flair up my abd. pain is out their and it takes a couple of days of hard narcs. to get it under control and my doctors have been great about making sure I'm well covered but with all the abuse out there, those of us with real issues are going to find it harder and harder to get our doctors to prescribe at home pain relief. I really with there was spell check on here.
deleted_user
deleted_user

Well- today my back pain got worse and it's not in the lumbar where it normally is it's more middle back on left side, Like I am having trouble breathing. Taking a deep breath. I don't understand this anymore I wonder what it's like to be pain free and sick free. I don't think I will ever know. I have nerve damage to in my leg though had an EMG done. I also have an enlarged hip bone on my left side and possible right as well. The left side (hip) was causing me so much pain they did an MRI and the large bone that doesn't fit into the hip socket tore my ligaments and cartridge and it was hitting bone to bone and braking off pieces of bone. Also tore a tendon in my left hip. Anyway had surgery 4 months ago today still on crutches.. They the doctors though that was causing my lumbar back pain because they kept saying that budging discs can't as much pain as I was in. Now the middle part of my back on left side is hurting I don't know if it's related to the budging discs or what....
deleted_user
deleted_user

i have back pain on my left side lung area when i have pluerisy....since whooping cough in 2010 i get pluerisy in my left lung often and the pain is in my back on the left side where my lung is....the pain may be due to inflammation ask them to ck your SED rates....it is a test that is NOT affected by cvid meaning the results are not off like so many ohter blood tests...the sed rates measure the amt of inflammation in your body....unlike tests for lupus and RA etc that are looking for an anti b (we often do not react to) this test just measures inflammation levels....
deleted_user
deleted_user

thanks- pconville is the SED rates check in like CBC or the comp metabolic panel? or is it a separated test that isn't tested often?
deleted_user
deleted_user

not sure i know the rhuem doc i had 3 yrs ago started cking it and told me it was high but could offer no help or understanding....i have been with my current rheumo doc for nearly 2 yrs and she tested it from the start and has been working on a solution..when the levels got REALLY high 1 yr ago it was time to begin trying some treatments....i have been doing better the last few mths she finally is getting a handle on it.....just ask to have your sed rate ck'd.
deleted_user
deleted_user

BTW the are LOTS of reasons your sed rates can be high....so that is why it took so long to reach a decision as to how to treat she tried several things to rule things out...it took awhile but she left no doubt as to the right treatment so the treatment now outweighs the risks.....if that makes sense.