New to forum - Desperate for answers/diagnosis - low back, hip, multiple joint pain

Hi, I am new to this forum. I want to give a background to the chronic pain I suffer in hopes that someone may recognize and/or relate so I apologize for such a long detailed post. I am a 32 year old mother of a 7 year old and 5 year old. I have chronic low back pain which is fairly diagnosed, hip pain, and most recently joint pain in ankles, knees, elbows, hands, fingers, and toes. The joint pain comes and goes. I have learned to deal with the low back pain, but this newer joint pain on "bad days" nearly has me to tears in frustration, pain, and annoyance. It also drove me to find this forum.

Background on the low back pain: In about around 2010 I somehow injured my back (my guess was rough housing with my children but I had chunky heavy babies and was always bending down and scooping them up back then so its possible it was already injured and became aggravated) and ended up with a bulge in my l4/l5. The bulge caused sciatic pain from my left hip, buttocks, thigh, and foot. I had numbness and tingling to my toes. I went to my doctor who ordered X-Rays, prescribed Tramadol, and referred me to a back specialist. I visited the back specialist who diagnosed it as a small herniation in the L4/L5, referred me to PT and Pain Management. I have been in pain management ever since. After about a year or so into pain management, I had another Xray done and an MRI done. I was told the herniation was still there, and i also had arthritis in my low back, as well as disc degeneration and spinal stenosis. All in the L4/L5 S5 areas. (It also may be relevant to mention that I have scoliosis and the curvature is right at my lower back where all of the problems are.) At this point the sciatica had cooled off and I suffered more from what I always described as a feeling of somebody just placing the trunk of my body onto my hips...bone on bone pain. If I do a thorough cleaning of my house (a lot of bending and standing) it sets off my pain. If I do a lot of walking or am on my feet for 30 minutes or longer, my pain is set off. If I am sitting at my desk at work, my pain is set off. Very frustrating. At some point I started getting more pain in my hips, first the left side, then both sides. Painful to the point where I couldn't sleep on my sides w/out being in pain, which is how i normally sleep due to my back pain. 2 years into pain management and another MRI done, no changes in anything. However, I have learned to deal with the back pain. My sciatica will flare up every now and then but not like it used to. Its mostly just the constant low back and hip pain. I am on pain medication and have had several RFA nerve burns, mostly successful. I have regular bursa injections into the bursa sacs of my hips which help. At work I use a heating pad on high all day everyday. It is very discouraging at times to be in such pain from normal activities, but then to add the following to it...I just want to throw my towel in!

This year, I have developed pain in all of my joints on top of the low back and hip pain (which I call my "normal" pain). It started in my knees, when i worked out I got pain in my knees. Then I started feeling it in my ankles, my wrists, my elbows, my fingers, even my toes. There is no obvious swelling. Sometimes I think there is minor swelling in my wrists and elbows but i'm not sure. I know there aren't any knots or large lumps. My grandmother has severe RA, and when I told her of my symptoms and of my family history, my pain management doc told me to see an RA doc. I went to the "best one in town" and had all of the blood work done in addition to xrays of all joints. The RA told me it wasn't RA, that I had osteoarthritis in my low back, but there was nothing inflammatory in my blood work. He told me it was Fibromyalgia. At that point I was just so grateful for a diagnosis, I accepted it. Then I went and I did my research on Fibro and now truly do not feel that is what it is. The pain is restricted to my joints when i have a flare, I get fatigued but not to the point where I have read of the "Fibro Fog", I don't have the "pressure points", and I talked to people who knew people with it and had it, etc. and honestly my symptoms just don't match. I am very frustrated because i feel like the specialist just diagnosed me with the easiest diagnosis b/c he had ruled out RA. My pain mgmt doc wants me to see a specialist out of town, and I have yet to pursue that, but plan on it if feedback I receive supports it. I have accepted the "normal" pain i suffer in my back and hips and it is almost easier to manage because pain medicine and simply laying down help that, but days like today where I am just aching in every joint, I just feel so frustrated and helpless and tired. I feel like I am falling apart. Nothing has gone away, things have only gotten worse. Even if a diagnosis didn't mean a cure, I think I would just feel better with a diagnosis. I don't know if that sounds silly, but it would confirm for me that this is real and I'm not just some complainer suffering normal aches and pains I guess.

Thank you SO much for taking the time to read all of that. Again, I'm so sorry for how long it was. I hope it didn't sound whiny. There aren't many people that can relate to chronic pain so I am very careful who I talk to or "whine" to on my bad days (even a quick "omg i'm hurting so bad today" has to be gotten out every now and then) and I am hoping this is a supportive and informative forum because I really just don't know where to go from here.

It's possible you could have the beginnings of OA or even RA, but neither is at a stage yet where it's showing in the tests. My mom was in RA limbo for a long time- she was suffering from all the joint pain and other symptoms, but the RA factor wasn't high enough in her blood for it to be *considered* RA by her docs.

It could also be some other inflammatory response from something. Have there been any other tests done or ideas thrown around? Fibro seems to be the catch all diagnosis that people get when there's no clear alternative present at the moment and some of the symptoms match.

Have you been put on anti-inflammatory meds, or meds specifically for nerve pain? Or has it simply been the basic pain medication that you've gotten so far?

Thank you all for your responses. I really appreciate them!

Vickie - I think I did have a full work-up, or what I thought was a full work-up. When I went to the RA specialist he tested for a bunch of things including Lupus and Spondylosis (sp). However, the rest of the stuff like Lyme Disease I'm thinking would need to be ordered by my PCP as you said. I will try that route for sure. Thank you. And yes, I am a single mom to-boot! But we have to do what we have to do and we do it with a smile on our faceas much as possible! :)

LexiRae - I am currently on morphine ER 15 mg once a day, percocet 7.5 3 x's a day, and flexeril 10mg. I was prescribed Cymbalta (previously took mobic) but haven't gotten it filled yet because of there not being a generic form. I will be getting it filled this weekend though. The flexeril I take only on occassion at night before bed, if I'm able to. It makes me very "hungover" feeling the next morning if I don't get a good 8 hours sleep and i am up late usually doing school work. So I usually reserve that for the weekends if neccesary at all. As far as pain for nerve pain, I don't think so, but i'm not sure which pain meds are specifically for nerve pain.

Starbright - I never tried cold treatment, that may be something I try. Scared to death of going to a chiropractor and having conditions worsen! I have heard such horror stories! I will definitely look into the compression therapy though, that is also not something I've tried.

Again thank you all for your words of encouragement and advice! I am glad to have found this outlet!

 

When I took Flexeril, the only way I was able to get rid of that hung over feeling was to take it regularly (like every day regularly) until my body got used to it. After that, it was a great muscle relaxer for me for years until it became ineffective and now I've switched to something else.

If you're not in a position to be able to take it every day for a while, you might have better luck with another muscle relaxer.

Also, once you start the Cymbalta (which is actually a med used to treat nerve pain), it's really important you take that one EXACTLY as prescribed, and not to stop it abruptly, especially without talking to your doc first. It's just one of those. (I've taken that one too, lol)

And my last bit of rambling is that the nerve meds aren't "pain meds" but they can help with the pain. Basically, they're not opiates. If the Cymbalta doesn't work for you, Straydog gave you lots of other good ones to try. :)

My first post, but not a newbie to Chronic pain. I am 60 yrs old. Had spine surgery in 12/10 and then again in 12/12. Now have 22 screws from S1 thru T10 continuous. One cage, and 2 Illiac Screws. I could post a pic if it is possible, but don't know how.

I've been on Oxycodone and oxycontin since mid 2010. Also, cymbalt and lyrica. They all help to some degree, BUT, I am working on getting off Lyrica AND cymbalta due to the side effects. They HAVE worked well, but I have learned to find better ways. As far as the Oxycontin/codones, I use them sparingly.

But the reason I am posting here, is to offer some advice on how I manage my pain. My OA can really be nasty sometimes. Especially when rainy weather is coming. I use two products that are both the same drug. It is an anit-inflammatory. One is liquid that is called Pennsaid and the other is a patch called Flector. Both work terrific for the pain. I use both in different ways. They both work as an anit-inflammatory on the EXACT area you put them on. I pain the Pennsaid liquid on with a small paint brush. Mostly on my hands and wrists that can wake me up due to the nasty pain. I paint it on and within minutes I feel 80% better. It is fantastic. It does have a tiny amount of DMSO in it, which drives it into the area you put it on. The FLECTOR patches are 12 hour patches. So if you have an area where you can place them, they can be VERY effective. I use them on my spine, for the pain coming from Stenosis or bulging discs etc etc. I can tell you that these two RXs gave and still give me more relief, and safer relief with NO side effects (even though there is a list of POSSIBLE side effects that sound scary. But of course, they only matter if YOU get them) before my spine surgery in 2010 and the last one in 2012. My surgery in 2012 was a 12 hour surgery. But I was walking on the 3rd day, and walking with NO assistance at all on the 4th day. My surgeon is not only an absolute fantastic surgeon, but he was by far the best to deal with. My first 3-4 appointments, he spent an hour or more talking with me and listening, AND looking me in the eye and not seeming the least bit bored or uncaring. I am sure you all understand what I mean and how important that is.

I hope the info on the Pennsaid and the Flector patches helps you and anyone else who actually reads all this:)

Best of luck. And feel free to contact me if you need to talk.