'A Patient Voice' Community

hello, P --

this might end up being a duplicate. somehow i lost my original draft!

your mother needs to tell her dr that her pain meds are not working. if she does not want to tell him/her for some reason, there is nothing wrong with your calling her dr and telling him/her that you don't think her pain meds are working.

the dr will not be able to talk with you about your mother's medical treatment, but it will be useful for him/her to know what you have observed that makes you think your mother is still in constant pain and that her present condition has become life-threatening. after all, you are with her much more than the dr is, and you have much more opportunity to observe her than the dr does.

finally, if your mother is concerned that she might not be getting effective medical treatment, it is entirely appropriate for her to consider getting a second opinion or switching to another dr entirely.

please keep us posted on how you and your mother are doing.

-- susie margaret

Thank you for your reply. My mom has seen multiple doctors and they all know that the pain medicines arent working and keep prescribing my mom pain medicines, at one point they told her it was all in her head. i can tell you that it is certainly not. and i also forgot to add that anti inflammatory drugs are also ineffective.

I understand how frustrating it is to have uncontrolled pain. Sometimes shooting pains can be nerve issues. I have nerve pain in my lower leg due to a failed fusion surgery. My pain management Dr.'s prescribed me Topomax. This drug was originally prescribed for seizures, but later was prescribed for nerve pain as well. Another nerve pain drug is Neurontin, my sister who is a diabetic takes it for her neuropathy and nerve pain. I hope this will help you. It is so hard to go from Dr. to Dr. and not get any concrete answers. Your Mother is lucky to have such a concerned daughter. I wish the best for you both.

hello again, P --

in my experience, "all in your head" -- esp directed toward women -- means "we can't figure out what the problem is, so please go away now." it infuriates me!

does your mother have a diagnosis for the shooting pains in her legs? is this why she has been seeing a lyme disease specialist? i am not a medical person, but i'm wondering how firm this diagnosis is. was your mother ever prescribed antibiotics? what concerns me the most, in addition to the Q of diagnosis, is actually something that i didn't see in your post -- whether or not her lyme disease specialist has been attempting to treat her pain as well.

here is the webMD info discussion of lyme disease -- http://arthritis.webmd.com/tc/lyme-disease-topic-overview . be sure to look at all of the sections of this discussion; they are listed on the left side of the page under the black print that says "lyme disease." also take a look at the info page from the national organization of rare disorders -- http://www.webmd.com/a-to-z-guides/lyme-disease-nord -- which has a list of resources for people with lyme disease.

as far as pain management itself, your mother might want to consider going to a pain management clinic; drs at these clinics are specialists in different ways of managing chronic pain and sometimes are more knowledgeable about pain management and pain meds than other drs are.

pain can be crippling, no question about it, and i'm not discounting its debilitating effects at all, but why is it that you think your mother's condition is life-threatening?

finally, would your mother be willing to see some other dr for a second opinion on diagnosis? as a practical matter, in my view, pain is pain, and if it can't be prevented, then it has to be treated (which is why i suggested a pain management clinic). but it also makes a difference why the pain is there -- because, depending on the cause, the pain might be able to be diminished or eliminated -- so i would be very unhappy if it were my mother and she didn't really have a diagnosis of what the cause of the pain was.

will you write back to let us know how you and your mother are doing?

-- susie margaret

Sounds like fibromyalgia to me!

Being tested for MS and Lyme Disease are the first steps in coming to the conclusion it's fibro. There's no test for fibro so doctors test for these two diseases and a host of others. When all the tests come back negative they're willing to call it fibromyalgia.

Tanya

my moms been to several different doctors she used to take steroids prescribed by the doctors that was more of a temporary fix seeing as they lose potency(from what i understand) her primary care doctor got mad at her for seeing so many other doctors and insinuated that my mom was a drug attic because of all the prescriptions shes been recieving for pain relief. i can tell you she doesnt abuse her painkillers in the least she wont even drink a glass of wine after taking one. and for fibro i dont remember why but the doctor said he didnt think it was that either..thatnks for everyones help im going to have her read this today. ps peacfulgirl - concerned son. haha

Hello.....I am normally on the FM board....MiMi in NC...but I did want to comment....I think that a person has to get to the root of the problem before they can be treated and expect to get better....and if the medicines are not working....well....I think I would encourage her to get another opinion....

I would encourage you to ask her doctor to check her VItamin D level....this is so very important....a simple blood test...but it is not a normal thing that the doctors will just check....YOU HAVE TO ASK....

I also have knee problems and it can be so very painful....I have had 4 right knee operations...and my left knee is also messed up....you do not say how old she is....but there has got to be something out there that will help her...

I know that I have had synvisc shots put in my knees several times....for the pain....

I also take Omegas.....and Glucosmine and MSM supplement for joints....

Getting sleep is such an important part of healing and trying to get well....we have to get enough sleep so that our bodies can repair....so if this is part of her problem....perhaps she needs to try something else....I know that I sometimes use a sound machine....which helps...

Also....if she would take a hot shower or bath before bedtime and put some lavender bath salts in the water....this will help her body to relax...

Stopain Spray can be bought at Walmart for under $8...and this is good stuff....she might want to try some of this...

It is bad when people are in so much pain and can not get a doctor to listen to them....perhaps you need to go with her to her appointments and make sure the doctors are understand how much pain she is in.....we have to "take control" of the health situation.....and if the doctor does not help....find another one....one who will listen and one who will help her...

Take care and good luck...


MiMi

Your post sure brought back a lot of memories for me. In 2004 I awoke to sudden EXTREME pain in both arms & both legs. Strange but true. I could hardly walk, had to use a wheelchair, husband had to bath me, etc. It took 1 1/2 yrs before I was diagnosed (due to my own research & persistence).

First they said, "You're just depressed" (I could've killed them). One doctor told me to get a night time job (when I mentioned I couldn't sleep bcause of the pain). Mayo Clinic said "you've got Fibromyalgia". I accepted the fibro diagnosis because my symptoms sort of matched...but I never gave up researching my other complaints & was eventually diagnosed with Tethered Spinal Cord at 43 yrs old. Apparently it is a birth defect that went undetected & didn't cause problems until one night in particular. It was after a long hard work day of bending, stretching to reach things & lifting.

Your post caught my eye because your mother describes "sharp pulsating pain." I believe that it's definitely nerve pain, however, which nerves are involved, would be the question. They're probably the nerves in her lower back.

I am not a medical person, but I have worked my entire life in the medical field. I understand medical terminology and numerous functions of the body.

My advice is to please get your mother to a neurologist. Ask her doctor to refer her if they will and if at all possible, please go to her appts. with her. Two heads working on these problems are much better than one. The person that is ill may even have a hard time remembering all of the conversation or what to do.

I think someone should be doing CT scans and/or MRI's of that spine, and possibly her knees.

Just my two cents worth....I wish her well....

If I had a clue I would share it. Chronic pain is real, and if we could get all doctors to accept that, maybe answers would be forthcoming. I wish you the best.

R.

Hi Psirus4,

Your Mom is lucky to have you as an advocate. I had Chronic Pain for 4 yrs. I saw 22 different doctors the first year alone. Here are a few suggestions:
--Keep seeing Doctors until you get a diagnosis that makes sense to you & your Mom, with a treatment plan that brings improvement. If you don't know what it is, it's hard to know what kind of doctor to see. Specialists like a Neurologist (suggested by an earlier post) & a Rheumatologist (the type of doc that most commonly treats Fibro) are 2 suggestions.
--One thing I learned by seeing many specialists; if you're a hammer, everything looks like a nail. They view your Mom's case through the filter of their training & experience and diagnosis is rarely an exact science... if only every disease had a definitive blood test. You need to take the diagnosis seriously, but if it doesn't ring true and the treatment doesn't help, keep researching & seeing other doctors.
--I encourage you to take your Mom to a Pain Mgmt Clinic, as another poster suggested, especially a multi-disciplinary pain clinic. There she might see an Anesthesiologist, for relief from the symptom of pain, a Neurologist to try to determine what's causing the pain, a Physical Therapist to strengthen muscles surrounding the knee and help maintain her physical function in spite of the pain and a Therapist to deal with the emotional aspects of pain. Those are just examples but you get the idea.
--When you call the Pain Clinic, the most important Doctor (IMO) is the Anesthesiologist as (s)he can help relieve the pain. When you schedule a first appointment, there are probably several Doctors to choose from. If the person you speak to seems reasonably helpful, try asking them this: "I'm sure they're all good Doctors, but if your Mom or the person you love most was experiencing terrible pain and no one could figure it out, and nothing was bringing her relief....(just tell your story) which of the Doctors would you most strongly suggest she see first?" It's worth a shot - it worked for me and it's how I found the Doctor I credit with getting me better.
--A good book I recommend is The Pain Cure by Dharma Singh Khalsa. He writes about finding the right combination of different types of pain medications. Finding my "right combination" ultimately started me on the road to recovery.
--I was eventually diagnosed with Complex regional pain syndrome (also called Reflex Sympathetic Dystrophy or RSD) and you may want to research that as well. I'd say more about that, but you're only allowed 4000 characters per post. I'm not sure I could even explain what RSD is in 4000 characters.

Stay strong, it sounds like you're doing a great job helping your Mom. And when you're in that much pain, it's hard to have the emotional strength to deal with this alone.

The only problem with that is the fact that Fibro has specific areas of pain; bi-lateral pain (both sides) above and below the waist. Shooting pains usually stem from the spinal cord.

I would go to a Rhumatologist. I did have those kind of pains and went to an Ortho Surgeon who replaced my knee. My heart goes out to you that there is no diagnosis at this point in time.

I've heard Fibromyalgia af ew times, here. You only mention the knee pain though. I have Fibromyalgia, and it's usually widespread pain as it's a disease that's causes your nerves to constantly fire pain signals to the brain. It also is characterized by chronic fatigue, insomnia, stomach issues(like IBS), headaches.. does your mom have any of these problems? Also does the weather affect her pain level?
I was diagnosed a few years ago at the Cleveland Clinic, and was told to go on disability or get out of the cold climate. My family and I moved back to California 2 months later; I told my doctor unless he wanted to become my sugar daddy and pay my bills, I could not afford to go on disability.
I hope your mom gets a good doctor and a good diagnosis! Let us know how she's doing.

My mom does have shooting pains widespread in her body but her legs are what bothers her the most, and weather definitely affects her. when its getting ready to rain she knows it because her muscles hurt more. she does have insomnia due to the pains, but no ibs that i know of or headaches. Should she get tested for fibro again? because the symptoms certainly fit. I really appriciate all the advice. i havent been back on here to check the posts in a while as ive been out of town but im still here reading all of your posts and my mom has the password for the account so she is on here checking on it periodically also. She probably isnt going to be feeling much better because we had to put our dog to sleep and bury her today. i hope that doesnt make things worse.
thanks again.
-Brendan