Hi all,
I am in too much pain to type but I wanted start by saying I had Lyme disease years ago, which they felt lead to MGUS and my symptoms.
I get tingling, cramping, temperature and skin color changes and chronic severe pain. I used to go to Fox Chase Cancer center, and the pain and palliative care doctor prescribed Nucynta (tapentadol) and then morphine to give me some quality of life.
I ended up leaving and finding something closer, so I have new docs now. I was back on Nucynta, but all of these meds have side effects for me, so I decided to take a month or 2 break from meds and I am back in intractable pain hell.
I am scheduled to see my doctor next week, and I hope we get back on track, but, for now, the pain is becoming unbearable. I can’t find anything to suppress the foot, arm and hand pain. I spend much of the day groaning and limping and just hoping I get hit by a train.
I hope going back to 600 mg of Nucynta a day along with 600-1200 mg of Horizant (gabapentin enacarbil) a day, which helps.
I am alone with my pain? I feel so isolated in life. Pain and suffering has chased everyone out of my life.
So hello.
Forums
Re: MGUS - new to forum and in horrible pain
Hi Guitarguy, I am sorry to hear of your awful pain. I haven't been on any of the drugs that you take for that, but if it is that bad, perhaps you just call your cancer centre and doctor tomorrow and try to get an urgent appointment before the weekend, or at the least on Monday.
It sounds like a lot to deal with right now, and good luck to you in getting some help for this also.
It sounds like a lot to deal with right now, and good luck to you in getting some help for this also.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: MGUS - new to forum and in horrible pain
Hi there,
I have not heard of any of those drugs, but the type of pain you describe sounds like peripheral neuropathy (PN)? I had PN after treatment, but I know it can happen from the M-protein itself damaging nerves.
The common drugs used for PN with myeloma patients include nerve medication like Lyrica (pregabalin). I took it for a while, and it helped. My issue was my feet felt like I was walking on broken glass shards all the time, and I would get the pins and needles and temperature pain (when cold).
I have not heard of any of those drugs, but the type of pain you describe sounds like peripheral neuropathy (PN)? I had PN after treatment, but I know it can happen from the M-protein itself damaging nerves.
The common drugs used for PN with myeloma patients include nerve medication like Lyrica (pregabalin). I took it for a while, and it helped. My issue was my feet felt like I was walking on broken glass shards all the time, and I would get the pins and needles and temperature pain (when cold).
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: MGUS - new to forum and in horrible pain
I suspect lys2012 may be on to something. I was diagnosed as MGUS last year because they were trying to find the cause of my pain. I was in a lot of pain as well. I'm so sorry you are suffering so much.
I have peripheral neuropathy likely due to herniated discs. I also have fibromyalgia which I have dealt with for over 20 years.
I have tried many pain medications. I can say that the things that worked best for me recently was gabapentin and Cymbalta (duloxetine). Unfortunately, I had to go off the Cymbalta due to hot flashes / sweating. Then most recently I had to drastically reduce the gabapentin due to concerning issues of memory loss, confusion and unsteadiness.
Now that I have cut the gabapentin in half, it is clear it was highly effective in treating the pain. However, I was showing signs of early onset memory loss. This is not a compatible side effect, so we'll have to look into something else.
Get back on pain medication as soon as you can. Pain makes it difficult to think and make decisions, not to mention just living life.
Glad to hear you are seeing a physician soon. Good luck.
I have peripheral neuropathy likely due to herniated discs. I also have fibromyalgia which I have dealt with for over 20 years.
I have tried many pain medications. I can say that the things that worked best for me recently was gabapentin and Cymbalta (duloxetine). Unfortunately, I had to go off the Cymbalta due to hot flashes / sweating. Then most recently I had to drastically reduce the gabapentin due to concerning issues of memory loss, confusion and unsteadiness.
Now that I have cut the gabapentin in half, it is clear it was highly effective in treating the pain. However, I was showing signs of early onset memory loss. This is not a compatible side effect, so we'll have to look into something else.
Get back on pain medication as soon as you can. Pain makes it difficult to think and make decisions, not to mention just living life.
Glad to hear you are seeing a physician soon. Good luck.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: MGUS - new to forum and in horrible pain
Thanks. My MGUS is the kappa type, I believe, and of that group, 30% or more have peripheral neuropathy (PN). My MGUS was found looking for answers for my pain.
I guess it is PN. The symptoms are not numbness, but intractable pain, some sensitivity to temperature, skin color changes.
Since I have been without pain meds for almost 5 weeks, I am at the end of my pain rope.
I have to stop listening to people who say I should not be taking pain meds. Well, I have to live in this hell, so if pain meds give me 20 happy comfortable years, or the alternative of a longer life filled with intractable pain, I will choose the pain meds.
Maybe my state will have medical marijuana soon.
Next week I should be back on Nucynta and Horizant and Cymbalta. I never felt the Cymbalta did much. I would guess Lyrica is similarly ineffective for me.
Maybe we will use the Nucynta ER.
Maybe I just require a lot of pain meds. One doctor had me on 900 mg day of Nucynta as well as with Vicodin, and then high doses of morphine. Nucynta seems best for me – kills pain and doesn't give me nausea or constipation like morphine.
Weird part is that many of my symptoms started after I had ulnar entrapment surgery and then the symptoms spread to my feet.
How could this link to my arm pain? Maybe the arm pain was mistakenly identified as ulnar entrapment syndrome when really it was MGUS? Does that even make sense?
I guess it is PN. The symptoms are not numbness, but intractable pain, some sensitivity to temperature, skin color changes.
Since I have been without pain meds for almost 5 weeks, I am at the end of my pain rope.
I have to stop listening to people who say I should not be taking pain meds. Well, I have to live in this hell, so if pain meds give me 20 happy comfortable years, or the alternative of a longer life filled with intractable pain, I will choose the pain meds.
Maybe my state will have medical marijuana soon.
Next week I should be back on Nucynta and Horizant and Cymbalta. I never felt the Cymbalta did much. I would guess Lyrica is similarly ineffective for me.
Maybe we will use the Nucynta ER.
Maybe I just require a lot of pain meds. One doctor had me on 900 mg day of Nucynta as well as with Vicodin, and then high doses of morphine. Nucynta seems best for me – kills pain and doesn't give me nausea or constipation like morphine.
Weird part is that many of my symptoms started after I had ulnar entrapment surgery and then the symptoms spread to my feet.
How could this link to my arm pain? Maybe the arm pain was mistakenly identified as ulnar entrapment syndrome when really it was MGUS? Does that even make sense?
Re: MGUS - new to forum and in horrible pain
On Pubmed I read a study that found that, of people having intractable peripheral neuropathy pain, one third of those were found to have MGUS or smoldering myeloma as the root of the nerve pain. Plus, those with the IgG paraprotein spike, which I have, 35% have neuropathic pain.
My doctor at Fox Chase and also locally both said chances are it will remain the same, or get worse, so I should expect to have to stay on medication or possibly have to go with something stronger, etc. I should have listened and stuck to that protocol instead of testing the waters with taking less.
The weird thing is that my nerve conduction testing all came back poor. That was about 2 years ago when I looked into it again. They wanted to perform surgery on 3 of my limbs, including both arms, so that I don't continue to lose grip strength, but a 2nd and 3rd opinion said it was too risky. However, if an internal process such as MGUS is slowly damaging my nerves, that can show on an EMG test as well.
My doctor at Fox Chase and also locally both said chances are it will remain the same, or get worse, so I should expect to have to stay on medication or possibly have to go with something stronger, etc. I should have listened and stuck to that protocol instead of testing the waters with taking less.
The weird thing is that my nerve conduction testing all came back poor. That was about 2 years ago when I looked into it again. They wanted to perform surgery on 3 of my limbs, including both arms, so that I don't continue to lose grip strength, but a 2nd and 3rd opinion said it was too risky. However, if an internal process such as MGUS is slowly damaging my nerves, that can show on an EMG test as well.
Re: MGUS - new to forum and in horrible pain
GuitarGuy-
I am not a doctor, but a retired PT who worked with many people who had chronic, intractable pain. What you are describing and how / when it started sounds more like chronic regional pain syndrome (CRPS). It usually is triggered by some traumatic even that can be as minor as a hang nail.
The things that you said that make me think of this condition is that you have temperature and skin color changes in the areas where you are experiencing the pain. This is very characteristic of CRPS. The other thing about CRPS is that you can develop it in other parts of your body distant to where the initial insult was. So, you really may have had ulnar entrapment that set up the cascade of pain events that have developed since then.
That's not to say that you don't also have peripheral neuropathy. Have you been seeing a pain specialist? Because you mention Fox Chase, I assume that you were / are seeing an oncologist. You should also be seen by someone who is a pain specialist. CRPS isn't an easy condition to treat, or live with, nor is PN.
I hope that you are able to find the right medication / treatment that manages the pain that you are experiencing. People who don't understand what severe, chronic pain is don't know that pain medication is an absolute must.
Nancy in Phila
I am not a doctor, but a retired PT who worked with many people who had chronic, intractable pain. What you are describing and how / when it started sounds more like chronic regional pain syndrome (CRPS). It usually is triggered by some traumatic even that can be as minor as a hang nail.
The things that you said that make me think of this condition is that you have temperature and skin color changes in the areas where you are experiencing the pain. This is very characteristic of CRPS. The other thing about CRPS is that you can develop it in other parts of your body distant to where the initial insult was. So, you really may have had ulnar entrapment that set up the cascade of pain events that have developed since then.
That's not to say that you don't also have peripheral neuropathy. Have you been seeing a pain specialist? Because you mention Fox Chase, I assume that you were / are seeing an oncologist. You should also be seen by someone who is a pain specialist. CRPS isn't an easy condition to treat, or live with, nor is PN.
I hope that you are able to find the right medication / treatment that manages the pain that you are experiencing. People who don't understand what severe, chronic pain is don't know that pain medication is an absolute must.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: MGUS - new to forum and in horrible pain
Mugus and Peripheral Neuropathy - There is a connection, in that circulating proteins could be wrapping themselves around nerves and damaging them.
I may not have explained this well. I have had a skeletal survey, many blood tests, and a hip bone biopsy and a belly-fat biopsy. All good. I do not have multiple myeloma. I have MGUS IgM, and I have small fiber neuropathy, causing me to use a wheelchair a good part of the time, but can walk with increasing pain.
I have been told to go to Mayo Clinic in May to try to find the connection. If they agree on DADS (distal acquired demyelnating sensory neuropathy), then treatment with my oncologist with Rituxan (rituximab, MabThera) would follow. He reports that some patients have stopped the progression of nerve damage and have been able to regenerate new nerve fibers with this treatment.
I hate the pain and use Oxycodone, 1/2 of 5 mg small tablet, every three hours, 4 times a day. Then I go without anything while sleeping and giving the body some rest from opioids. It works for me without messing with my brain like Neurontin (gabpentin) does. Improves my outlook on life as well. The other meds, like Neurontin, seem to mess with my ability to think and perform.
I may not have explained this well. I have had a skeletal survey, many blood tests, and a hip bone biopsy and a belly-fat biopsy. All good. I do not have multiple myeloma. I have MGUS IgM, and I have small fiber neuropathy, causing me to use a wheelchair a good part of the time, but can walk with increasing pain.
I have been told to go to Mayo Clinic in May to try to find the connection. If they agree on DADS (distal acquired demyelnating sensory neuropathy), then treatment with my oncologist with Rituxan (rituximab, MabThera) would follow. He reports that some patients have stopped the progression of nerve damage and have been able to regenerate new nerve fibers with this treatment.
I hate the pain and use Oxycodone, 1/2 of 5 mg small tablet, every three hours, 4 times a day. Then I go without anything while sleeping and giving the body some rest from opioids. It works for me without messing with my brain like Neurontin (gabpentin) does. Improves my outlook on life as well. The other meds, like Neurontin, seem to mess with my ability to think and perform.
Re: MGUS - new to forum and in horrible pain
I agree it could be any or all or a combination of these. Who knows what came first, the chicken or the egg? Doesn't matter at this point if it is MGUS, compressed nerves, MS, Lyme disease. I also read, aside from ulnar issues with MGUS, that MGUS people tend to have a very difficult time clearing of infections and getting sick easier due to immune issues.
No matter what, I need relief and to feel better. My oncologist and pain management doctors have all felt Nucynta should be the best for MGUS neuropathy, CRPS, diabetic nerve pain and similar conditions.
I see the pain management doctor tomorrow and I am asking to start Nucynta again. I already called a few pharmacies to see who has it in stock.
Either way, I deserve to have relief and be able to enjoy life again.
The pain is now 100% in the way of my life.
No matter what, I need relief and to feel better. My oncologist and pain management doctors have all felt Nucynta should be the best for MGUS neuropathy, CRPS, diabetic nerve pain and similar conditions.
I see the pain management doctor tomorrow and I am asking to start Nucynta again. I already called a few pharmacies to see who has it in stock.
Either way, I deserve to have relief and be able to enjoy life again.
The pain is now 100% in the way of my life.
Re: MGUS - new to forum and in horrible pain
I am back on Nucynta and it is such a relief to not feel as much pain.
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