The Lupus Forum banner

1 - 8 of 8 Posts

·
Registered
Joined
·
5,267 Posts
Discussion Starter · #1 ·
Hi everyone.

My gp is pulling things out of his hat I think. I went yesterday for lower back pain, hip pain on left side, worse at night and sometimes into the leg.

I feel like Lupus automatically is blamed for any ailment I have. I figure I just strained the lower back or something to that nature.

He only made lay down and he lifted each leg straight in the air and said it is not your nerve.

That was it. Says sometimes with Lupus you can get what is called sacroiliitis. Go get xray and do physcial therapy.

Now I have never heard of this being related to Lupus and have researched it. Doesn't really fit what I have but I will do the xray. I am not confident the xray will show anything because it only shows bones. Another unecessary burst of radiation I think.

I would think if necessary an MRI would show more of what is going on.

Has anyone ever had this?

Thanks !
 

·
Registered
Joined
·
328 Posts
Hi Paula,

I've never had that, although I suffer alot with back pain. I would probably do the xray as well, just to be sure it's not a disc problem that you are experiencing. If that xray doesn't show anything, and your pain continues I would definately ask for an MRI.

You're going through so much right now, please let me know if there is anything I can do to help. You're in my prayers.

Karin
 

·
Registered
Joined
·
4,369 Posts
I have heard of sacroilliac joint problems in the bottom/back/pubic region. I I suffer with problems in that area permanently - have never yet found anything that works for long!

If you google sacroilliac joint it should come up with sites that help.

Lesley
 

·
Registered
Joined
·
2,123 Posts
Hi Paula

I find the doctors tend to use lupus for allot of things we get, when they don't know the answer. My sister and I both have it, and she doesn't have lupus. So ya, we have to wonder if the docs aren't pulling dxs out of their hats or just blameing lupus because they don't know. Take care of yourself and I hope the pain is short lived. I would do the x-ray as well just to rule out any other problems and give you some peace of mind.

Hugs Jude:)
 

·
Registered
Joined
·
11 Posts
Hi there - I suffered (and still on occasions do suffer) with incredible pain in my sacroiliac joint. I do not have lupus, I have fibromyalgia. I spent years in physiotherapy and often had my lower back strapped to help the pain. I had an X-ray last year which showed nothing, my physiotherapist said it would show nothing and she wanted me to have an MRI but my Dr would only refer me for an X-Ray - apparently an MRI is a good thing to have just to check nothing sinister is going on. Some days my pain was so bad I felt like doing away with myself. The physio ended because they could do nothing further for me, the aim was to try and strengthen the muscles around the joint to help support it but the pain was too much for me. Went to an orthopaedic surgeon for my bursitis in shoulder and asked him. He said they don't like to give cortisone injections for sacroiliac problems or sciatica as the procedure has to be done under General Anaesthetic and also it isn't that effective, he said it can even make the condition worse. I was told to go home and live with the pain! Nice one! Thanks v. much!!

Some months on I have had my nortriptyline dosage upped and I have also started a product called XXXX which is a very expensive vitamin type drink made from Acai Berries (search that on google for more info) and I have to say my pain is all but gone (I have the odd day of pain and do need to be careful on some movements I make) but my quality of life has improved dramatically. One last thing to try is water walking which I am told is very good for this pain - I never got around to it as discovered the XXXX first but the water walking would be a start and a lot cheaper!

I know exactly what pain you are going through and I sympathise, I hope you arrive at a diagnosis quickly and that you are able to relieve your pain in a much shorter time than I was. All the very best.
 

·
Registered
Joined
·
40 Posts
Wow! I swear, I am going through the exact same thing right now. I have had low back/hip pain for a little over a month now, but it got really bad the last few days. Monday I went to an Urgent Care clinic where they gave me an injection of Diluadid (sp?) in my butt and it made me sick. The physician's assistant said that he couldn't send me for an MRI, that my GP had to do that. OK.........

So, after the diluadid wore off, I made an appt. with my GP. I went on Tuesday. He walked in, told me to come with him, and made me lay in the floor on my stomach. I had fallen earlier that day (sneezed and it hurt so bad my legs collapsed) so I really didn't want to get down there again. He informed me he knew exactly what I was going through and this would help. Now we're in the area where the nurses work and I was crying like a baby because it hurt so much and I just could not believe this was happening. I was down there for about 15 minutes and after he reallized I could not do what he wanted me to, he told me to get up. I couldn't move. He said, "Come on, get up, you can do it". AFter a few minutes of this, I explained to him that I had fibromyalgia and went on to say that I have UCTD and he finished my sentence with "...yeah, I read that, come on, get up". I don't think he believes in fibro or UCTD. Then he helped me up, which meant he grabbed ahold of me to get me up. Fibro -- must have forgotten about that because he was none too gentle.

He decided all I needed was physical therapy. Thankfully my husband was with me and insisted on an MRI. He had his nurse schedule PT and told her that PT would come first. If the only MRI available was at the time of the PT, we would cancel the MRI in favor of the PT. :eek: :eek: :eek: Then I got an injection on the other side of my butt of Toradol. That did absolutely nothing.

I did go to PT and he wasn't as positive as my GP that it was a muscle issue, he was more leaning towards a ligament or even a possible infection!!! I also had an MRI later that day. Don't take this the wrong way, but I'm actually hoping something odd shows up in the MRI just so I can shove it in his face. Usually I am quite complicated, but this time when I want to be, I will be normal. Normal doesn't happen that often to me!

Needless to say, I was very unhappy with my GP yesterday. I see him again tomorrow -- hopefully will get my MRI results. I also have another PT appt in the afternoon. I've missed 2 full days of work this week and only worked 4 of 6 hours today. Tomorrow I'll only be there for 2 hours. I've missed a LOT of work since my hysterectomy in Sept. and I've had to quit my EMT job due to pain and illness.

Sounds like this may be not unusual for UCTD/fibro/lupus.
 

·
Registered
Joined
·
336 Posts
I have Sacroiliitis

I have been dealing with this for about the last 2 years. I had x-rays initially that showed sclerosis and inflammation of the SI joints as well as mild arthritis at my L5S1 vertebrae. I had an MRI about a week later that only showed the spinal arthritis, the SI joints were read as normal. Both my Rheumy and PT felt my back pain was more likely due to the SI joints. About 6 weeks of PT helped (12 visits) and when I have the SI pain now, I start right back with my exercises and it gets better without having to go back to PT. I also am now back on Plaquenil which might be keeping the autoimmune disease/inflammation more undercontrol. The SI joints are synovial joints and my understanding is that Lupus can attack any synovial joints.

Nancy
 

·
Registered
Joined
·
1,388 Posts
Paula,:there:
I too suffer from this and actually it was one my symptoms that dx'd me with my 1st auto immune disorder in 1995-It was called Reiter's Syndrome and I caught this disease by food poisoning. It is now being called Reactive Arthritis. Anyway, pain in the sac joints was one of the symptoms and I was a classic case back then. I am still bothered by it and I also have degenerative disc disease and that does not help my lower back pain. I have gotten injections and those have helped and I use nsaids and pain meds when needed. I also use those patches that have like ben gay in them. I use my heating pad all the time.
I hope some of these tips will help. I am sorry that you are in pain.:(

Take it easy and do the best you can at trying to get some needed R&R


Hugs,
Becca
 
1 - 8 of 8 Posts
Top