Ok we all know I have arthritis and fibro

[DammitJanet]

Anyone know of any other reason for me to have really severe leg pain down my shins...I guess its my calves. Those bones between my knees and my ankles. Yeah the joints hurt too both the knees and the ankles but the bones themselves hurt like crazy and feel like I have hot lava running through them. I cant get anyone to listen to me on this. Its not muscle aches. Its not a joint. Its not when Im walking on them. Odd as it sounds...sometimes heat makes it better so I soak in the bathtub but as soon as it wears off the pain is right back. The pain medications arent touching this pain.

I have to get out of bed and kind of walk around a bit and sit down. If I just lay in bed it gets so intense it kills me. I wondered if Im starting to get restless leg syndrome on top of everything else but I dont get jerky movement with it...just this lava burning pain.

Docs just assume everything that is wrong with me from a sore throat to a hang nail is from either the fibro or the arthritis and never really listen to me! Sometimes I worry that I could have something really wrong and it would go unnoticed until I dropped dead and then they would go...oh look...she isnt breathing...is that a sign of fibro?

 

[flutterbee]

Pain and burning always make me think of inflammation of some kind...or infection.

Have they run a WBC, ESR or CRP? Are you running a fever?

 

[Hound dog]

Could be nutrition related. Do you take a multi-vitamen?

I had those a long time ago. Mine was a vit defeciency. Haven't had it since, knock on wood.

I know what you mean about docs though, they seem to get into a groove and after that it's hard to get them to think outside the box.

Hugs

 

[Nomad]

A couple of things crossed my mind that it could be related to or that might be of help...
I thought of water retention. Are you taking any kind of diuretic? Even if you are not taking anything prescribed, there are some over the counter types that are usually sold in the isle for menstruation remedies. If you suspect swelling, you might try taking something like this as directed, avoid salty foods and drink more water.

Also, are you taking anything for inflamation? I suppose I am very fortunate that Naproxen works very well for me.

I have a friend that is getting really good help with aches and pains from Glucosamine/Chondroitin. It is an alternative supplement that many swear by.

Can you exercise lightly? I have seen plenty of articles indicating that light exercise (when at all possible) is helpful for those suffering from fibro pain.

Another thought I had...are you taking any new medications or any new combination of medications? Could it be a bad reaction of some sort?

Could it be a neuropathy? http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm
I don't know much about this particular topic....I went to another website and this is what I found:

medications that cause the following:

PN=Peripheral Neuropathy
SS=Serum Sickness
Acetazoleamide PN
p (para)-Amino-salicylic acid SS
Anti-histamines SS
Barbiturates PN & SS
Colchicine PN
Colistin & polymyxin PN
Digitalis PN
Dimercaprol (BAL) PN
Ergot alkaloids PN
Heparin SS
Hydantoin derivatives PN & SS
Hydralazine PN & SS
Insulin SS
Iodides SS
Isoniazid PN
Mercurials SS
MAO Inhibitors PN
Nitrofurantoin PN
Penicillin SS
Phenolphthalein SS
Phenylbutazone SS
Probenecid SS
Procaine amide SS
Propylthiouracil SS
Quinidine/quinine SS
Salicylates SS
Streptomycin PN & SS
Sulfonamides PN
Vancomycin PN

Also, posters there felt that to prevent neuropathy the following supplements were helpful: B50, B12, CoQ10. Other possibilities are alpha lipoic acid and benfotiamine (this last one might cause weight loss!)

I would keep your legs warm, consider massaging them gently, perhaps a light (short) walk (if possible), avoid salty foods, drink plenty of water, taking at least a multi vitamin if you are not doing so already and get to the doctor if things don't improve shortly.

 

[Josie]

Have you ever looked into Lyme Disease? I did a quick search on the Lyme board and bone pain and leg pain are Lyme symptoms but I didn't see anything about burning bone pain. Both of the LLMD's we have seen have thought fibro was Lyme until proven otherwise. I always wonder about Lyme when someone has a lot of different symptoms with no good explanation or diagnosis.

 

[1 Day At a Time]

Janet,

Neuropathy and swelling come to mind immediately. Neuropathy can cause hot, searing pain.

How have your blood sugar levels been? Are you Diabetic, or are any of your family members Diabetic? I think a visit to the doctor is really in order if the pain doesn't calm down.

Please let us know how it goes...

 

[klmno]

I wonder about blood flow- have you had an ecocardiagram stress test? I think that is what it is called- it checks blood flow through your body. Or, would bone spurs cause pain like that?

I'm sorry you're having this pain, especially on top of everything else you are dealing with.

 

[Marguerite]

It sounds like shin splints to me. It's a horrible pain, I hate it. You get it sometimes when you go jogging, or change the way you walk, or swap from high heels to low ones or back again. Trying a new exercise can do it, too. And sometimes it takes surprisingly little to cause it. The pain kicks in usually the day after, so sometimes it's hard to connect what caused it. Ad the pain will continue for days and days, especially if you are still doing what brought it on. It should subside after a week or two, though.

I did a bit of checking online and I found some information answering a Yahoo question. Although this exercise is designed for runners, it looks like it could help:

"I have an exercise that will help you strengthen your shins so that part of your leg is stronger and not as suceptible to shin splints.
You will probably need a partner to help you. Sit on the floor with your legs out straight in front of you. Have your partner push gently against your toes/middle of your foot toward your body. You push with your leg muscles against/toward them. Then reverse, have them hold your toes on top and pull your feet toward them while you try to pull your toes toward yourself.
To strengthen the muscles stand with your back to a wall. Then lift your toes about 20 times off the ground. The more often you do it and it gets easier for you then increase the number of times you lift your toes. You can increase to three sets of 25. These things will help prevent you from getting shin splints in the future and also help get rid of them sooner. You also want to make sure you stretch the rest of your legs, especially the calves because the tighter they are the more they are going to put strain on the rest of your leg."

Marg

 

[Lothlorien]

Have you ever conisdered seeing a holistic doctor? There are pharmacists that are hollistic pharmacists and may be able to give a consultation. The treatment would not be cheap, but you would almost certainly benefit from it.

 

[DammitJanet]

I considered shin splints...but then what on earth would I have done to cause them? LOL. Its not like I have been in training. Neuropathy is something to consider. I would expect that the topamax and lamictal would keep it at bay but then maybe not. I may have to break down and try neurontin again...sigh. I just cant do the lyrica. Or maybe I can convince them to try me on the mirapax first.

I dont know. I cant try a holistic doctor because medicare doesnt cover them and I just dont have that kind of money.

Thanks everyone.

 

[flutterbee]

http://www.sportsinjuryclinic.net/cybertherapist/front/lowerleg/shinsplints.htm

http://en.wikipedia.org/wiki/Periostitis

 

[DammitJanet]

no redness or bumps...well none that are unusual. And it doesnt seem to respond to a specific area being touched.

 

[flutterbee]

Restless leg can manifest in many different ways, but really the hallmark is the irresistible need or urge to move the legs. Mirapex and Requip can have some pretty nasty side effects, including uncontrollable gambling and sexual impulses. With your history of BiPolar (BP) and Borderline (BPD), I don't know that I would want to start with one of those drugs. They're actually Parkinson's drugs that were FDA approved for RLS...so they're pretty heavy duty drugs.

I had to leave for a bit, but I'm going to do some more research on neuropathy. My neuropathy doesn't hurt - it just causes numbness/tingling and weakness - so I don't have first hand experience with the pain part. Although what I have in my legs seems more like a neuropathy to me because it's like all the nerves in my calves are standing on end. It's not painful, per se, just too much sensation....makes me want to come out of my skin.

Have you been tested for diabetes, by the way?

 

[DammitJanet]

They tell me Im not diabetic but I havent had that 6 or 8 hour test. I think Im hypoglycemic.

I do worry about the dopamine drugs and my brain. God knows Im messing up my brain chemicals enough...lol. However, I dont think I need to worry about gambling and increasing my sex drive would be a plus right now considering its in the negative column. But like you said...I dont know that this is restless leg.

I dont know what it is except Im miserable and in pain and I am ready to kill someone. It does seem worse if I have done more stuff during the day but even on completely listless days I have pain.

 

[amazeofgrace]

<<<HUGS>>> I know it stinks when you do not feel well

hugs and prayers

 

[flutterbee]

I'm still looking, Janet, but I would ask to have your blood calcium level and your vitamin d checked...potassium, too. If your kidneys are healthy, pick up some magnesium supplements at the store (they're cheap). Do you take calcium supplements?

And as far as doctors relating it to the fibro, remind them that fibro is muscle pain and this is bone pain. There is also something called enthesitis that can happen with arthritis and it can be quite painful. For some people, it's the first manifestation of their arthritis.

http://arthritis.about.com/od/arthritissignssymptoms/f/enthesitis.htm

http://en.wikipedia.org/wiki/Enthesitis

 

[flutterbee]

This is the best information I've found on describing symptoms neuropathies. This talks about diabetic neuropathies, however just take the blood glucose language out and it's the same thing. Neuropathies can be caused by many things, including chronic inflammation.

http://diabetes.niddk.nih.gov/dm/pubs/neuropathies/index.htm

Here is more that doesn't talk so much about diabetes:

http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm

 

[4sumrzn]

From your description...first thing that came to mind..shin splints. I sure hope you can find out soon what is causing the pain & find the relief you need !

 

[1905]

Hi Janet,
I had pain there once from a shot of white blood cell medicine (neupagin)(sp). It was weird, I could feel my bone marrow because the medicine was a different temp than my body temp. Maybe it has something to do with your white blood cells. I don't know, just throwing that out there.-Alyssa

 

[Marg's Man]

I also immediately thought "shin splints". It doesn't need any kind of heavy training to bring it on; just a change in in whatever is normal for you. If you've got pain that is causing a change in gait (as I know you have)- that can cause it too.

Just a thought.

Marg's Man