Massive pain - any thoughts?

Silroc · #1 (**permalink**) 08-07-2008, 10:26 AM

I was diagnosed as a Type 1 diabetic on 5/24 of this year, by getting a call at work from my doctor telling me to get to an emergency room right then because my sugar was 580+. I didn't even know what that meant, but I went, and spent four days in the ICU with an insulin/IV drip. When I got out, I learned about how to care for myself with this new development.

I take a nightly Lantus injection of 35 units. I check my sugar 4 or 5 times a day and use Novolin if needed. It took me a week or so, but I managed to get it pretty well down, no huge spikes or drops, no trouble injecting or anything.

Around June 7th, I started having pain in my knees and biceps. Sort of a deep ache that came and went. Since then, it has spread and worsened to the point where I now have terrible pain throughout my legs, arms, chest, armpits, and neck, and it has gone from an on/off deep ache to an ever-present sharp pain, almost like a combination of bad sunburn and having fiberglass under my skin.

I've been to a number of doctors, a few ERs, and no one has been able to answer me as to what is causing the pain. I've now lost my job because I can't function (I worked as a police 911 call-taker/dispatcher, and you can imagine distractions like massive pain or drug hazes are not a good idea there..), and since no other prescriptions have worked at all, I now take Morphine pills just to be able to get through the day. They don't completely hide the pain, they just make it bearable - sort of.

All total, I take the two insulins, Cymbalta, morphine, levothroid for a thyroid issue, and lyrica.

I'm at the end of my rope.. Without my job, I'll lose my benefits, and won't be able to afford my meds - and I can't get a new job when I can barely walk. Has anyone ever encountered anything like this before?

-Craig

adiantum · #2 (**permalink**) 08-07-2008, 12:15 PM

Craig, could this pain be from the addiction to the pain killers?
I, like many, have an addictive problem to mild pain killers like paracetamol & cant take them longer then 2 days . After that the pain becomes unbearable .
The message on the pack says ' if pain persists see your doctor'. This is a warning that your system has become used to them.
I used to take 2 panadeine forte every 2 hours & eventually that didnt dull the pain. This pain was because of the addiction to the codeine . I stopped taking it & now use heat packs for pain.
Your on heavy duty stuff , so could have the same problem.

Scrabblechick · #3 (**permalink**) 08-07-2008, 01:19 PM

Craig, I'm really sorry to hear about the pain you've been having. Are there any pain specialists in your area? Sometimes, these folks can really help pinpoint the cause of your pain and get you on some good therapy. They can also help ease you off the morphine.
Good luck in getting your pain under control. I'll certainly be lifting you up in prayer.

SueM · #4 (**permalink**) 08-07-2008, 01:30 PM

Craige, it's just a thought but if that pain started after you started Lantus ask to switch to another basal insulin.
There have been quite a few reports of people having joint and muscle pains from using lantus.

Silroc · #5 (**permalink**) 08-10-2008, 03:00 PM

I don't believe it has to do with pain-killer addiction, because I've never taken them before, really. I didn't start the morphine, or any of the others until after the pain started getting very bad. My father had a problem with addiction to perscription drugs, and I've always swung to the other end of the pendulum to avoid that - I barely ever even take a tylenol. When I finally gave in and begged my doctor for something, I was worried he was going to think I was a junkie of some sort.

After the first few perscriptions did nothing at all to help, I was referred to a pain specialist, who put me on the cymbalta. That didn't really seem to do anything either, so my regular doctor put me on the morphine. I have to follow up with the pain specialist in a week or two and see.

I'll look into asking about switching from Lantus, I had no idea there was a difference out there. Thanks.

-Craig

mzteacher · #6 (**permalink**) 08-10-2008, 03:42 PM

hi craig,
so sorry to hear of your health and job problems...can you take a leave of absence while you try and sort things out?
sending good thoughts your way as you and your dr.'s sort this out...glad you found the forum and great source if knowledge and information here...
good luck and keep us posted...
susan

Funnygrl · #7 (**permalink**) 08-10-2008, 07:44 PM

What are your blood sugars actually like?

Silroc · #8 (**permalink**) 08-11-2008, 07:45 AM

Unfortunately, I was still within the 6-month "probation" period at work, so I couldn't take a leave of absence.

My sugar levels are almost always between 120 and 140. I've had two occasions when they dropped to 60 or so, and a few times when it rose to 200-250 and I had to take an injection, but for the most part the Lantus has worked at keeping them in the right area.

LancetChick · #9 (**permalink**) 08-11-2008, 12:12 PM

Try a different insulin. I just looked up Lantus allergy and found this message:

Boy is it ever nice feeling healthy again. I have been off the Lantus now since the beginning of April and what a difference. The cramps are gone and other than normal aches and pains, I am not hurting from head to toe. Have not been to see the dr. yet because I have to go in with proof that it made a difference. I think I am ready now. Don't know what it is about these 24 hour insulins, but my body just does not like them. I have not heard of others with the same problems, so must be a person allergy, but won't be taking them again.

Lantus allergy? - Diabetes - Adult Type II - MedHelp

Funnygrl · #10 (**permalink**) 08-11-2008, 02:14 PM

I'm honestly just not one to really believe insulin can cause these vague systemic effects. Everyone really seems to like to blame lantus for causing problems. I personally am allergic to it, but my response was very localized. I could be wrong of course, but I just have a hard time believing something that's made naturally in our body can cause all that. And I don't believe it's from it's acidity, otherwise you'd hear of people drinking OJ and getting depressed or having pain.

SueM · #11 (**permalink**) 08-11-2008, 02:54 PM

Quote:

Originally Posted by Funnygrl

I'm honestly just not one to really believe insulin can cause these vague systemic effects. Everyone really seems to like to blame lantus for causing problems. I personally am allergic to it, but my response was very localized. I could be wrong of course, but I just have a hard time believing something that's made naturally in our body can cause all that. And I don't believe it's from it's acidity, otherwise you'd hear of people drinking OJ and getting depressed or having pain.

The trouble is FG Lantus does not acure naturally in our bodies does it? All it is is a combination of gawd knows what and it has been called insulin. It is not insulin it's a load of chemicals and bacteria thrown in the cooking pot.
There are many and I mean many people who have had problems with it and Levemir too. Levemir doesn't seem to cause as many problems though.
The manufactures have got to start taking notice of what people are saying.

Funnygrl · #12 (**permalink**) 08-11-2008, 04:00 PM

Quote:

Originally Posted by SueM

The trouble is FG Lantus does not acure naturally in our bodies does it? All it is is a combination of gawd knows what and it has been called insulin. It is not insulin it's a load of chemicals and bacteria thrown in the cooking pot.
There are many and I mean many people who have had problems with it and Levemir too. Levemir doesn't seem to cause as many problems though.
The manufactures have got to start taking notice of what people are saying.

They do many, many, many clinical trials. I work at a research hospital and regularly have patients participating in clinical trials. If they so much as sneeze it gets reported. But none of the side effects like depression and generalized pain were reported.

As for it being insulin, yes, it is insulin. It doesn't have bacteria in it. It's grown in bacteria. And when did bacteria become an evil thing? Ever hear of penicillin?

I largely think people have two separate conditons (ie, getting diabetes and getting pain) and since the two occurred at similar times, people jump to assume they're directly related. And they're not always. Then people jump online, and post their experiences, and by golly, we have a population of 3 it happened too! Now we MUST have reasoable cause here!

I'm not saying it's impossible. I'm just saying it's 99% unlikely and I'm not convinced I buy it.

LancetChick · #13 (**permalink**) 08-11-2008, 04:45 PM

Well, it's pretty easy to find out if it's an allergy, and that's to discontinue the suspicious insulin. In fact, Sanofi-Aventis does say in the product literature that allergies to insulin products can occur, though they are rare.

mazea · #14 (**permalink**) 08-11-2008, 05:02 PM

I had a reaction to Lantus, and it started and lasted the 3 months I was taking it. My reaction was in my right foot and was severe pain at the slightest touch, swelling, reduced circulation in my right foot showing up on a bone scan( the dye is stronger in foot with good circulation) and foot being cold and changing to blue colors. I was unable to walk or stand for 3 months and used crutches to go everywhere even to the bathroom. I was fed up with being unable to walk and the extreme pain(like sometone putting nails in my foot and placing it over a fire) so I stopped taking my Lantus (not reccommened but I did up my dose of novorapid) and all the pain/swelling went away within 22 hours of stopping the Lantus. Just to make the point that it was the Lantus, I started taking the lantus again and the extreme pain returned immediately within an hour, I couldn't walk again. I changed to protophane and I have been getting about and walking since I stopped the Lantus 10 days ago. The protophane, stopping my novorapid(not recommended) gave me less of a reaction and enabled me to walk again, If you want to see if it is the Lantus, try a different insulin. I hope you feel better soon!

mazea · #15 (**permalink**) 08-11-2008, 05:44 PM

Quote:

I work at a research hospital and regularly have patients participating in clinical trials.

Maybe I was one of those that escaped diagnosis in your trial, as I was never diagnosed as having a reaction by my doctor in the months I took Lantus. I stopped taking my Lantus and had that odd good result and my doctor is only starting to suspect it.

It is a good thing that helps other people when people jumponline and post their valuable rare experience. Then someone with the same reaction will know, take action and might be able to walk again.