Post Mastectomy Pain Syndrome (PMPS)
Comments
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Hey Ladies. Been awhile since I visited the board. At last post I was going to a breast cancer weekend retreat. I had a great time, although I was in terrible pain on Saturday. When the pain gets that bad I use an ice pack, kinda numbs it for awhile. I was surprised that none of the women at the retreat had experienced the kind of pain we have. I've been going to physical therapy for a couple of weeks now. Sometimes I think its helping, other times seems to make it worse. I wish I could figure out why some days better and other days worse. I am suppose to go see a different pain management doc in about 2 weeks, although I am not hopeful about the appointment. I also take Neurontin daily. I have also emailed Dr. Oz and Oprah but never heard back from them. Oh well, I need to go stretch and then off to bed. My physical therapist says that to stretch the fascia I need to hold the stretches for 60-90 seconds, that is a long time, I had to buy a small times because I wasn't holding the stretches long enough. Take care!
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Jean, thank you so much for the info on the length of time for stretches. I hold the stretches for only 30 sec. Actually have a hard time even with that length with the wall stretches. I find it easier to stretch while laying on my bed. Will try to make it to to 60 seconds! I stopped my PT 3 wks ago after 30 sessions, thinking it was making it worse. Yet, the scar tissue is forming and causing more pain in my underarm area, so I am not sure if I should go back or what to do.
Have you had any side effects from the Neurontin?? It does numb my pain, told my Dr it brings it down from an 8 to about a 6. Not sure if the horrible side effects I have from the drug is worth the small decrease in pain. However, I cannot function at all when not taking anything. Yet when on the drug I have trouble reading because of the blurry vision and numerous other problems.
I also have 2 upcoming Dr. appts at pain clinics in a few weeks. I feel like I am Dr. shopping! Not sure what other options are available.
Hope everyone is having a better day today.
Rose
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Doctors have known about the use of paravertebral nerve blocks for a long time....so I am wondering how a paravertebral block differs from the procedure mentioned by our Canadian sister, Souad? Did some of us, all of us, none of us receive this paravertebral nerve block prior to mastectomy?
Published in 1998:
Ann Surg. 1998 April:
"Use of paravertebral block anesthesia in the surgical management of breast cancer: experience in 156 cases"
. E Coveney, C R Weltz, R Greengrass, J D Iglehart, G S Leight, S M Steele, and H K Lyerly
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1191303/
Published in 2006....
Preincisional Paravertebral Block Reduces the Prevalence of Chronic Pain After Breast Surgery
http://www.anesthesia-analgesia.org/cgi/content/abstract/103/3/703
Published 2008:
"ACUTE AND CHRONIC PAIN FOLLOWING BREAST SURGERY"Authors: Serene H. Chang, Vivek Mehta, and Richard M. Langford
Barts and The London NHS Trust, United Kingdom
Received 16 July 2008; revised 9 December 2008; accepted 2 January 2009. Available online 10 February 2009.
Summary
Background
Successful acute pain management after breast surgery remains challenging, and if not achieved, may increase the likelihood of subsequent chronic pain.
Aims
This article aimed to evaluate the evidence for varied techniques described for peri-operative pain management in breast surgery, and to review the literature on chronic pain after breast surgery and particularly ‘post-mastectomy pain syndrome'.
Method
A Pubmed search was performed, with the key words "mastectomy" and "pain" for articles in the English language in the adult human population (age > 19 years), looking specifically for different analgesic techniques that have been evaluated.
Results
Thirty-three peer-reviewed publications with pain outcome data were included, ranging from 15 to 289 patients per study (total n = 2104). Twenty three were randomised controlled trials and the rest were prospective or retrospective audits and case series. Inconsistent trial methodology precluded a meta-analysis. Paravertebral local anaesthetic nerve blockade resulted in lower pain scores and fewer side effects than opioid-based regimens. Three risk factors emerged predicting chronic pain post-mastectomy: higher post-operative pain scores, age <65 years and inclusion of major reconstructive surgery.
Conclusion
Paravertebral block should be considered for use in major breast surgery. Pain control should be optimised/a priority for both acute care and to potentially reduce chronic pain.
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Deborah - that's really interesting reading. Thank you for posting the links! I sent one of the articles to the "pain doctor" I'm meeting next time I go down to Boston and I'll ask him about it. Isn't it interesting that doctors don't have a way of sharing what I would call "best practices"? Seems like they should have a red phone in their office, like the bat phone. If they did you can bet we'd find the number and give them a wake up call !!!!!!!!
I wasn't offered the paravertebral block. I did have acute pain immediately after surgery that turned into PMPS.
I have to confess to being discouraged yesterday. The task seemed overwhelming and even impossible. It just seems that there's a road block at every turn. But after a little pity party I thought about all of you and how brave and hopeful you are. And I'm not giving up. Here is a bit of the paper I'm writing with the above mentioned doctor. You are so right when you say that all of your stories are interwoven with my own. Some of this will look familiar because I posted it here first.
Let's start by talking about it.
If you are a doctor who cares for breast cancer patients, please talk about PMPS. Talk about it before surgery. Talk about it after surgery.
Validate our pain. Talk about treatment options, even if the options are limited.
We have the right to know the risks before surgery so we can make informed decisions. The woman I talked to in pre-op patient education said that "women are overwhelmed" so she doesn't like to talk about specific types of pain. Is it the same for men having prostate surgery or hernia repair?
We have the right to post op care that recognizes that chronic pain will affect around 50% of us. That means we can't sleep, we can't exercise, it's hard to advocate for ourselves.
We have the right to the latest treatment for this pain. If there isn't any real treatment, tell us. We want to know the truth.
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Fog: Your da woman! I like it!
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Deborah, i am printing this article out NOW. Thank you!!! I have an appointment w/ a pain mang dr tomorrow..i got lucky b/c i called my BS & said i am in agony & i dont have an appt till next week & teh PS wont do naything..my BS is onmatrernty leave & her assisant called the PM dr & got me in 2morow morning..wouldnt that of been a better thing for my PS dr to do..i really need to re think when it comes time if i want him fixing my left side or do i travel to columbia to the guy who did mny breast reduction...welli have time..i'm also going to start makimng copies of thiese atrticles & giving it to my BS & PS!!! i cannot believe the pain i am in sometimes..cleavage area radiating up my chest & when my rt breast sweels the whole breast all around it throbs & goes right thru my back...anyone else here have these pains and/or really just on 1 side ?
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Hi Shosi,
I am so sorry about your pain. At first I had pain on both my left and right side and radiating to the back of my shoulder blades and down my left arm. This lasted for about a year. It was very intense pain. Throbbing all the time. Now it is mainly just on my left side, (sometimes my right side will act up though) under my left armpit and radiating down my left arm. This is the side I had my lymph nodes taken out and had radiation therapy on. There are many words that describe the pain; throbbing, burning, aching, sharp pain,feels like a bungy cord is wrapped around my chest pain. I can relate when you say, "I cannot believe the pain I am in sometimes". How do we do it? It is hard, but we do it. I wish you the very best with pain management doctor tomorrow.
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quick update on me..saw PM dr & he gave me stronger f what i am taking now & not much help..:( we'll see whaT HAPPENES WHEN ALL this mositure leaves..my breast is swollen on the side that my arm when i type can feel it...does that happen to anyone else here? Even my "good" side has been bugging me & painful last nite...
seeing PT 4 my shoulder blade b/c my breat stuff seems to be effecting it...:( it hurt like hell so between the mositure & p/t yesterday I am in agony today...i am praying that once he can loosen up my hslder blade it will help my breast,.
being back @ work is gr8 emotionally..physically not so sure
i'll keep u updated!!
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Shoshi - you posted as I was writing, asking how you were doing. Thanks for the update. I wish someone could give you an answer. Such terrible pain. I feel for you.
I have an update on the article I'm working on with the pain guys in Boston. They are going try and get the NY Times to publish it. Anyone have a connection at the Times???!!!!
Love to you all. Fog ps. hey Hipp, how are you doing????
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Got a call yesterday from pain mgmt clinic to come in afternoon, 2 wks ahead of appt. That's a first! Yet left very depressed.
Dr. confirmed some of what is disscused in above article about chronic pain mgmt after surgery. She did not feel that nerve blocks have worked well with PMPS. She currently has about 25 patients. She is very frustrated and is currently working with area breast cancer surgeons to try and get them to f/up and monitor patients pain after surgery. She was visibily upset that she now has another patient(me) to treat 6months after surgery.
She explained that when pain does not get under immediate control, it can become chronic fast. It is the most common kind of PMPS. Yet not the only, for some reason they do not know why some women develop it months later. She believes it can be due to some kind of physical/psychological injury.
Her treatment plan for PMPS is a multiple modality of drugs, lymphadema therapy and psychological therapy. The drug part is depressing for me. She said that any one drug is only 30% effective for neuropathic pain that has become chronic. She believes that only a multi drug, including an opioid narcotic analgesic, can get the pain under control in the brain/body. Once it is under control for at least 6 months, can you then taper back on the drugs in hopes that the brain and body can be retrained.
The drugs really scare me and I will have to think long and hard about this. She recommended Cymbalta 1XD in the morn and the lowest dose of Dilaudid liquid 2XD. She told me that it is not addictive if done properly. When I discussed the withdrawl for coming off, she stated that most drugs have withdrawal sytmptoms. Doesn't that mean they are addictive? Yikes, I'm someone who doesn't even like to take Motrin! This ruined my weekend.
Well, I tried to take good notes and wasn't sure if I anyone was interested in this information but decided to share.
Rose
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Rose, I understand your sadness upon needed to take meds. I had so many SE from taking mine.. I did taper off. I have settled with the drugs that do not cause me issues.
Flexural at bedtime allows my painful sleeping body to sleep 7-9 hours a night.
Ultram ( pain med) taken 3 times a day, allows me to live and function with a low pain level of about 2. I was an 8 daily and I thought I would go insane. I have WAY to may people who depend upon me , so going insane was not an option.
Ultram is a non narcotic. It may not work for everyone. but it did me. I take them as I need them.. and do not fear being hooked on them. Heck, when my doctor saw how well they worked for me.. he gave me a script for 180 a month of these pills....lol..
I HATED needed to take pills to Rose. And I seem to be known at my Cancer Center ( as told to me, by my PT) as a tough cookie...
I now keep my pills with me at all times... If I feel pain coming on even a tiny bit.. I take a pill.
I REFUSE not to have at least 80% quality of life. REFUSE.
It will be ok. I was offered Lyrica.. Cymbalta..etc.. and I personally refused. But my situation might be different. If one of those drugs gave me 30% better life... well.... my other drugs that I was willing to take give me about 80% better life.. so I a ok with that.
God Bless ALL you sweethearts in pain. Someday... future sisters will not deal with this. I hope we see it in our lifetimes !
Laura
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i definitely have it. I had bilat mast with sent nd biop on the 9th of feb. It was called skin saving/sparring for a delayed reconstruction I told them to take everything, nipples and all. But I know have pain in my nipples even though i don't have any. i was also told the pain is a good sign that i am healing and the nerves are getting feeling back. I have nothing to compare it to but my insides hurt/ache where the tissue has been scrapped/carved out. My breast surg told me to just keep massaging the tissue but it is painful.
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Hey Foggy, hows the weather up there? So I emailed a friend of mine who might know how to get an article published. I'll let u know. I would be happy to mail my bs a copy of the letter so she can know that we are serious about the pain we are having.
Rose, I would be thrilled if a pain management dr would give me narcotics.. They are afraid of addiction. This pisses me off because I only take what I need and would not abuse it. Currently I am perscribed 2 percocet a day by my primary care. This is not enough. I only take them at nite so I can sleep. The dosage is so low it really does not help much. I am seeing a new pain management dr. He ended the apptment saying "you seem like a nice lady but no opiants". I did not say anything cuz I am seeing him again next week. If he says no to percocet,I'll find someone else who will. I have tried every drug on earth. This new dr gave me Elivil, an old school atidepressant,that does nada, for the pain. I also take nerontin,nada. I have tried lyrica and it did not help. This dr did tell me what I have is nerve ending pain and seems to know what I am talking about, but I guess drs have to try the easy stuff b4 they perscribe narcotics. I want a cure not a pill....
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Rose, thank you for taking notes and sharing. I am not surprised that the pain doctor you saw is frustrated with the breast surgeons. I've talked to pain doctors who say they attend breast surgeon staff meetings and do presentations on PMPS. But still the surgeons don't do post-op follow up or communicate with their patients. The thought of beginning a regime of medications is sad. I have resisted so far but I completely understand the need to do something, anything to get the pain under control.
Laura, I just have to say you are incredible. Your spirit and caring always brighten my day. Thank you thank you thank you. I'm happy to hear you've found medication that works for you. You deserve 100% of your life and I know that some day you will have it back. God bless you.
Hipp - it's windy up here and there's a storm on the way for tomorrow. Thanks for checking with your friend about getting something published. There has to be a better way to communicate. But for now...I'm heading to bed. Love you all! Fog
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Fog, such a dear statement you made to me. Thank you! You made me feel so nice!
(HUGS)
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hi ladies..doing research on my own & found this link ..i will post the article ^& the web page but it appears its a GOV. website..if this is..how come more women dont know abt this & DR's too....
http://www.ncbi.nlm.nih.gov/pubmed/8880841Pain. 1996 Aug;66(2-3):195-205.Pain after breast surgery: a survey of 282 women.Wallace MS, Wallace AM, Lee J, Dobke MK.Department of Anesthesiology, University of California at San Diego, USA.Breast surgery is a common procedure performed in women. Many women who undergo breast surgery suffer from ill-defined pain syndromes. Although there exists a few reports on the incidence of post mastectomy pain, there are no published reports on chronic pain after breast reconstruction. This investigation attempts to characterize the pain after four types of breast surgery: (1) mastectomy, (2) mastectomy with reconstruction, (3) cosmetic augmentation, and (4) breast reduction. A questionnaire was mailed to 479 women who underwent breast surgery at the University of California, San Diego Medical Center between January 1988 and December 1992. A second mailing was sent to women who did not respond to the first mailing. Women were divided into four groups; mastectomy, mastectomy with reconstruction, cosmetic augmentation, and breast reduction. In the mastectomy and mastectomy with reconstruction groups, only women who had a lumpectomy with axillary dissection, a modified radical mastectomy, or a radical mastectomy were used in the study. 59% of the women responded. The incidence of pain occurring at least one year after surgery in the mastectomy + reconstruction group (49%) was significantly higher than the mastectomy (31%) and breast reduction (22%) groups. Thirty-eight percent of the women with breast augmentation complained of pain. Women who had reconstruction using breast implants had a higher incidence of pain (53%) than those without (30%). The pain incidence in women who had reconstruction without implants was identical to women who had a mastectomy without reconstruction. There was no relationship between the use of silicone or saline implants and pain (22% and 33% respectively). However, the submuscular placement of the implants resulted in a significantly higher incidence of pain (50%) than the subglandular placement (21%). Of the women that reported pain, arm pain was significantly higher in the mastectomy and mastectomy + reconstruction group (56% and 42%, respectively) as compared to the breast reduction group (0%). Most patients reported intermittent pain in all groups. Of the women that reported pain, the mastectomy and mastectomy + reconstruction group had higher pain related to movement (41% and 42%, respectively) than the augmentation and breast reduction groups (15% and 9%, respectively). The peak pain intensity was significantly higher in the augmentation group as compared to the mastectomy group. Our incidence of post mastectomy pain is higher than most reports. The incidence of breast pain is highest in the mastectomy + reconstruction and augmentation groups which is assumed to be secondary to breast implants. Every effort should be made to achieve the best cosmetic result in breast reconstruction which in many cases justifies the use of breast implants. However, these women should be counseled on the possibility of developing chronic pain.PMID: 8880841 [PubMed - indexed for MEDLINE]Publication Types, MeSH Terms Publication Types: Clinical TrialMeSH Terms:AdultBreast/surgery*Breast ImplantsChronic DiseaseFemaleHumansMammaplastyMastectomyMiddle AgedPain MeasurementPain, Postoperative/epidemiology*QuestionnairesLinkOut - more resources
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another article i found: has anyone ever heard of this injection & tried it?
http://www.ncbi.nlm.nih.gov/pubmed/20085178
Altern Ther Health Med. 2010 Jan-Feb;16(1):54-9.
A series of case reports: clinical evaluation of a complex homeopathic injection therapy in the management of pain in patients after breast cancer treatment.
Orellana Alvarellos G, Ruiz de Viñaspre Alvear P, Kaszkin-Bettag M.
Center of Obstetrics and Gynecology, Ginesia SA, Providencia, Santiago de Chile, Chile.
OBJECTIVE: In breast cancer patients, posttreatment pain often appears after several months and strongly impairs health-related quality of life. Conventional methods of pain reduction are often ineffective. Injection therapy with Traumeel (Heel GmbH, Baden-Baden, Germany), a medication with analgesic properties used in homotoxicology for treatment of the pain associated with trauma as well as a mediator of inflammation, was proposed as an innovative approach for pain relief after breast cancer treatment. DESIGN: Nine patients, still suffering from a high level of pain after breast cancer therapy despite use of postoperative treatment with conventional analgesics, were invited to participate. A Traumeel and procaine injection was administered once a week for three to 10 sessions. The level of pain was assessed by a pain score and physical and psychological status by a questionnaire before and directly after injection and again at follow-up visits after 3 and 6 months. RESULTS: After the last injection, all patients experienced a marked reduction of their level of pain on average from 7.6 +/- 1.5 to 2.4 +/- 1.4 points on a scale from 1 to 10 points. After a followup observational phase of 3 and 6 months, pain score ratings increased slightly again in some patients but remained consistently low in others. In any case, the ratings of pain levels did not reach the values assessed before the start of Traumeel injection. Similarly, health-related quality of life improved with this injection therapy. The perception of pain relief with Traumeel injection was high in 8 of 9 patients, reflecting an overall perceived positive outcome and tolerability of this treatment. CONCLUSIONS: This case series represents a first encouraging approach to using this complex homeopathic injection for pain relief in breast cancer patients.
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I am new to Breastcancer.org and was enlightened to find an article on PMP (I didn't know there was a name for it) as I've had the symptoms since my mastectomy. It will be a year in April and I am still feeling pain across my chest area and under the arm. I now know it isn't just me so thanks so much.
Erder
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ROSE,
Today is my 2nd day to take cymbalta 30mg once a day. the rheumatologist said it is fibromyalgia.
So I'm trying this cymbalta 30mg for 2 weeks then 60mg and physical therapy.
Not too excited about cymbalta but I will give it a try and see how It works with my pain. Right now the side effects are lost of appetite, dry mouth, and light headed. I will see it all these symptoms will go away in a week, I hope so.
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((((((((((((((((ANGEL40)))))))))))))))))))))))))
I was wondering if you were going to start the meds...
I have GREAT hope for you !! I just do!
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Estepp, FYI (but you may already know this) Ultram comes in a once-a-day extended release form that may work well for you. I think Ultram is a really great drug. It binds to the opiate receptors but is non-narcotic.
Anne
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Shoshi,
I have utilized the site "Pain Aid" for about 5 years. Highly credible information/people there.
Marcia
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I had a moment of pure joy this morning. I had a moment free from pain, not ignoring the pain, but actually free from it. I had forgotten what joy felt like...not because I'm unhappy but because my pain distracts me most all the time. If I am given more moments without pain and if these moments someday cobble together to make minutes and then hours free from pain - I will be joyful. I will be thankful for what I used to take for granted - just moments of being, without pain.
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Estepp,
today is my 3rd day of cymbalta and my pain is less or at least I could see close to normal. My big problem is lost of appetite, I'm so small and petite that I need food. I really hope after a week that it will go back to normal.
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ANNE.. I did not know this... as I am a TERRIBLE pill taker.. I might ask about this.. THANK YOU for bringing it to my attention!
ANGEL40............... AWESOME!.... But as far as eating... here is what I did.. : Set your cell phone to go off ( alarm) every two hours... then.. it reminds you to eat something ( even when NOT hungry)
Keep food bars with you... eat a little something ( 70-130 calories) every two hours...If you do this.. you will be fine and can continue taking the drug s that help you !
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Angel - I lost my appetite for a month or so after my hysterectomy (I guess it was a hormonal change but not sure). I didn't have any weight to lose and it was a scary feeling - just thinking about eating made me nauseous. This is what worked for me: my daughter made a pot of vegetable soup full of good things including beans for protein. Every couple of hours I ate a tablespoon or two, even for breakfast. For some reason it was the only thing I could force myself to eat. Like ESTEPP says, find something you can tolerate and eat every few hours. Don't try to sit down to a big meal three times a day. I know how hard it is to feel this way. Hug to you.
Erder - glad you found us! How are you today? Have you found anything that helps your pain?
I wrote to Oprah yesterday and told her about PMPS. For some reason I am expecting a call !!!! Will keep you posted. Love to all, Fog
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Estepp and Fog,
Thank you for the advice and support. It always feels sooo GOOD to know that somebody supports you and someboday cares. I will try the cymbalta at night today which is my day 4 to take it. yesterday I felt so weak from not eating and I work full time plus the fogginess or drowsiness from the drug. I will dry eating little by little as your advice.
THANK YOU AGAIN!
Fog, Thank you for all your hard work.
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Angel, Looks like we started on the Cymbalta at the same time. I am having severe fatigue from it. I started on 20mg 1XD but I am trying to wean off the neurontin for the second time. Horrible withdrawal of anxiety and not sleeping. I know this from before or else I would of thought it was the Cymbalta. I have not gotten ANY relief from the Cymbalta but probably too low of a dose. Yesterday took it a little later around noon trying to keep the pain away with only taking 1 neurontin at 5pm-did not work well. My mornings are the best with the lowest pain. Going to email the Dr today and ask her how I am suppose to do this. I also want to ask her about Ultram. The internet sites state not to take Cymbalta with Ultram but she may say otherwise.
I would rather try Ultram first before having to go on methadone. Well, I hope everyone has a good day, I am off to a reiki session, which does help me for pain, for about 4 hrs.
Rose
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Rose,
I hope that you get the right medication and relief. Maybe cymbalta 60mg will work for you, ask the doctor.
Mine is fibromyalgia and it really help just for 20mg cymbalta but I'm praying that some side effects will be gone by a week.
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