Wellness

[151949]

My cousin's daughter (in her 20's too) was on chemo for leukemia and then after that started to have symptoms of fibromyalgia which I understand is a side effect of some chemo - then she started to get worse. More pain, more disoriented, more exhausted & depressed and they have worked her up for everything you can imagine - MS - myasthenia gravis - lou gehring disease - everything you can think of and they finally decided she has lupus. She is now on drugs to shut down her immune system. I have been encouraging them to try to get her to somewhere like mayo clinic or Cleveland clinic for a workup but - same as your daughter - she is on medicaid so she is limited financially where she can go. I can understand their pain and frustration as well as yours. They are now trying to get her onto Obamacare so she has some options outside of Florida, which , of course , they will have to pay for. Then, maybe, they can get her to a top notch facility for a through workup.

When i had spinal stenosis I had to wait for surgery until my surgeon came home from the Congo where he went with Doctors without borders. In that 4 month time I took Neurontin 300mg 3x a day. It helped with the pain but I wasn't able to work because it really knocked me out mentally, so I just hung out at home and slept a lot, and I was off it after the surgery.

[RedTop]

My husband has been taking the generic form of this drug for at least 10 years for severe diabetic neuropathy.  His current dosage is 800 mg 4x a day, and this medication certainly helps, but is not the only medication he needs for his level of discomfort.   Side effects have never been an issue for him.

My 82 year old mother also takes this drug for residual pain after shingles.  Her prescription is for 800 mg 3x a day, but she rarely takes the third pill.   Mom has some issues with being unsteady on her feet when she rises from a sitting position, but that was happening before the start of taking this medication.   This medication helps her sleep, and takes care of her pain.   

My doctor has always urged me to take new medications for 14 days, before deciding whether I can tolerate the drug.   

[gmkb]

I, too, have been following your posts for the past year about your daughter.  I was hoping some progress had been made in a correct diagnosis.  As I recall there was also an autism spectrum issue; could this be a contributing factor?  It is my hope you will continue to pursue an answer whether it be physical or psychological. Sad for you as a parent and sad for her quality of life.

I don't have any sound advice, but feel much compassion for your family.

My husband took Neurontin for a time before and following cervical spine surgery.

When the dose reached a certain level, he experienced the same side effects as your daughter.  The doseage was reduced and the side effects abated.

[fortune]

---

@hyacinth003 wrote:

---

@fortune wrote:

---

@hyacinth003 wrote:

My 28 year old daughter has been given Neurontin for pain.  No one has been able to diagnose the source of her pain.  No one will give her pain medication, despite 7 doctors, lots of tests, and her life in mess.

She has pain in her lower body, in her thighs, knees, ankles, and it just becomes the whole lower body.  She feels unsteady and weak in her legs at times. 

She is trying 300mg at bedtime now.  I know that is a low dose overall.  But, she is having the side effects!  She feels dizziness, unsteadiness, and mentally fuzzy.  It is knocking her out for sleep, which is not necessarily bad.

Wondering how long it takes and if anyone has had success with this drug.  I know about the drug, but not how long people take to see results.

Thanks.

Hyacinth

---

Have you gone to the leading physicians at teaching hospitals for a diagnosis?  I haven't been closely following your search.  It would be much better if she could be diagnosed and then treated specifically for her pain source.  Could it be a rare genetic disorder?  Those seem to be the hardest to nail down.  Can they do a DNA workup on a patient to find a genetic marker for certain illnesses?  Just a question.

I feel so bad about your daughter's illness!  You've been so strong and have persisted when most people would have given up!!

Bless you and HUGS from me to you!!!!!

---

We are somewhat limited in who we can see due to her being on Medicaid.  She has to have something under the law, and she doesn't get it from work.  Most doctors don't want to take Medicaid.

But, we are seeing specialists at the U of I for neurology and pain management.  She has seen 2 rheumatologists, 1 internal medicine specialist, and 1 family practice.

She will have a repeat thoracic MRI due to them seeing something, but they think it is artifact and a lumbar MRI since that hasn't been done yet.

They have even implied that this may be psychogenic.  I told them I totally DISAGREE, as I know her, watch her, and there's just no reason for her turning her life upside down. I wish it was!

Thanks for your kindness.

Hyacinth

---

I went online and found a site that has the most complete rundown of causes for symptoms that your daughter has.  The more knowledge you have, the better it is--even if it's just to ask more informed questions!  You sound like you've already been doing your homework!

http://www.epainassist.com/joint-pain/leg-pain

[Reba055]

@hyacinth003  It depends on the person as far as side effects go. Also, if you are not taking other drugs the side effects won't be as bad. I can't tolerate Neurontin at all. I know people who take pretty high doses. It does take time to adjust to know if it is tolerable or not. There are also other anticonvulsant drugs that might not be as sedating should that not work. They really do help with a multitude of pain issues, but there is always the benefit vs risk/side effects. 

Also some people can use much lower than normal doses and still get a benefit. 

[Reba055]

@hyacinth003  I noticed someone mentioned Elavil. That's usually one of the first things they try. It helps with sleep, pain, depression, etc. Has she tried anything like that?  I'm suprised they jumped right to Neurontin. 

[Lady Elaine]

I am so sorry to hear about your daughter's pain.  It's no way to live and I wish doctors were more aggressive with finding out the cause and what works for her individual needs. 

Ive had problems with nerve pain and have been on neurontin and had the same effects but they did seem to lessen over time. Another pain,management approach would be combining lyrica and cymbalta. It's shown efficacy in treating nerve pain and chronic pain conditions. 

[twinkies]

I do believe your daughters pain is real and she has someting going on that needs a followup , She does need to see a neurologist and an orthopedic doctor. She may have a back problem or a disease such as M.S. or fbromyalgia , It is something that need s to be looked into furthur . I was on neurontin for pain for about a month[sciatica and arthritis] , it did help me pain wize but after a few weeks I could not remember anything hardly at all . It affected my memory so badly I could not remember what I even had for berakfast an hour after , it scared me so much I got off it.  I also had trouble breathing on it.  I take lyrica occasionally at night now for pain and it helps me sleep. I used to take it more but it caused me to gain weight and who needs that? Both of these drugs neurontin and lyrica are addictive if taken in higher doses , I have found that lyrica does help me though.

cathy from ma

[CatsyCline]

i was taking Neurontin for a few years for work-related Anxiety, it has beeen used off-label for anxiety, hot flashes and RLS along with neuropathy.  my other doctors would be puzzled as to why i was prescribed Neurontin (i had no neuropathy) .  as an anti-anxiolytic i felt it made no difference. i found it made me drowsy so took it at night which helped my insomnia.  i had no trouble with discontinuing this med, just tapered off over 2 weeks or so.   it was too expensive for it do nothing for my anxiety (the generic was not available at the time)

[sfnative]

---

@Poodlepet2 wrote:

Many of these medications have to be titrated for the individual: a low dose may work for one person whereas another may need a higher dose. For some, certain medications may not work at all-or a combination of medications may be needed. That being said, I don't know that too many practitioners would be jumping to give her pain medication without knowing the cause. Seriously, it sounds as if she needs to go to a university hospital and find out the root cause. Has she seen a neurologist? I am not a doctor, but this sounds as if something neuromuscular is going on. We think that diagnosing would be easy, but as you can see with your daughter, it's not clear cut....she could also have some sort of autoimmune disorder. I would say this is the time she needs "big guns".

Poodlepet2

---

@hyacinth003

@Poodlepet2

Poodlepet2 has given you some good clinical Go-Tos.

Though you mentioned a number of physicians seen by your daughter, I would ask, as did Poodlepot2, if one was a Neurologist.  Also, if she has not been evaluated by a Rheumatologist, I'd think seriously about finding the best one in your area.  Also, I assume she's had MRI(s) and plain films and lab work-ups for the myriad of auto-immune diseases which exist.

As you're trying to get a handle on this, consider the following: each lower extremity consists of a femur (thigh bone), a patella (knee cap), a tibia (shin bone), and all of the bones which comprise the foot.

Most of these bones contain red and yellow bone marrow, which serve as factories or repositories for various elements required by the body and its many functions.  The surface of each bone is covered by the periosteum (a thin membrane) which contains millions of nerves.  (If you've ever had a bone bruise, you know how painful it is - it's that darn periosteum with its nerve endings that really cause the pain.)  Very, very close to each femur and tibia is a major artery and nerve. Basically, these are buried close to the bone to keep them safe from traumatic injury.

The soft tissue, aside from nerves, consist of muscles, tendons, and ligaments.  Joints are filled with synovial fluid.  Joints can be slow to heal, as there is no blood supply within the joint itself: this is why it takes time for the body to re-absorb Ringers Solution used in the knee for many procedures. 

@hyacinth003  I know you're an intelligent woman, but am not aware of information you may have on board, hence the above.

Most likely, that which is of clinical interest would possibly relate to: disease/disorder/trauma with origin in the Lumbar Spine; of the nerves not relevant to the Lumbar Spine; of the bones; of the muscles; or, of soft tissue not including muscle.

This requires clinical evaluation at as high a level as you are able to provide.  @Poodlepet2's recommendation to seek out a major University teaching center (not her words) - because your daughter has already been through the mill locally - is sound advice and something I would do or advise to any member of my family.

Please excuse the length on this Monday.  I pray to God that you will be able to find an answer for her: one which offers treatment.

God Bless ~ Rebecca