Bad experience with pain management Dr.

Bones, joints and muscles
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Hi All. I am feeling very conflicted and wondering if anyone can relate. I was diagnosed with fibro by 4 doctors about a year ago. I had went through a traumatic illness an autoimmune disorder called Wegeners. I was in intensive care and almost died twice. My lungs were filled with blood and the pain was unbearable. After I got out of the hospital my personal life also exploded. Very stressful and just sad all around. I recovered and started again, my Wegs was supressed with chemo and I was doing better. However, my pain from the Wegs turned into Fibro symptoms and chronic fatigue and it kept getting worse. I bounced around from dr to dr looking for answers and eventually kept getting told it was fibro. I accepted it eventually and the rhuematologists referred me to pain managment. My Dr in Wi was really great. She was supportive and always looking for alternative treatments and whatever she could to help me. She was a fibro specialist and said she doesnt believe I really have true fibro but it is maybe a hormonal imbalance and systematic inflammation causing all the pain. Fast forward to now. I moved here and the laws are strict, I guess all pain management doctors are scared. I feel like with my file that is thirty inches thick on chronic pain and now fibro, they would be able to help me. Well they wouldnt even give me an appointment without the records but I finally got them released after a month. The first pain management doctor "thinks outside the box" and some people say he isn't very good and some say he saved their life.

Well I go to the appointment. After an hour in a room while he was running late he came in. He asked me if there was an area of pain I needed to focus on. I had filled out 18 pages of intake forms where I listed everything and anything I thought might help him.If you have fibro and ever had to draw how you hurt on a little person you know how hard it is because you hurt in so many areas. I said that no there isnt a specific area, I hurt in so many areas but I would like to know what he could recommend so that I do not get worse. He seemed to understand and he pressed on all the fibro pain points which I have most of them but not all. He dragged a safety pin all along my feet and hands asking if it hurt. Made me bend around. So after literally 3 minutes of being in the room he said. All of your problems are because of sleep apnea, I am almost positive. I am going to order a sleep study. You are obviously very depressed and you must go on cymbalta. I tried to explain that I have been offered that once before and did not go on it because I am not comfortable with it after the research I did. He kept pushing it, very selly. Then he said all of my "food problems" and what not are caused by this sleep apnea. I do not know what "food problems" he is referring to. I eat a nutrient dense diet tailored for autoimmune problems. No processed foods and try to eat what I can afford that is organic to try and get some relief. I am heavy yes but I am also 29 and have terrible acne all of a sudden. I didn't even have acne as a teenager. It came on after the Wegeners and keeps getting worse. Hence the hormonal problems I suspect.

Anyways I just felt so conflicted about the cymbalta. I realize there is a possibility that I could get some pain relief but then again if he believes it is sleep apnea then why wouldnt we try to test for that first? See what comes of it and then go from there. I feel like adding a drug that alters my brain chemistry on top of everything I have been through should not be the first reaction. I feel like it should be the last resort. He also said I should go swimming twice a week which I want to do anyways but I have been struggling since moving here working full time and searching for doctors and a home to live in. He said my old phsyical therapy my Dr cancelled because it was hurting me was wrong, they need to keep me moving and do cardio and what not. I agree that old physical therapy was not good for me, my butt and back would hurt so bad I couldnt lay down after it. So he prescribed those things. My insurance will only cover 15 visits PT this year and he prescribed 45 in the next 15 weeks, well I cannot afford to pay for all of that out of pocket but I understand what he was doing.

I believe that he had some valid points about the sleep and checking it out is a good idea but he was so drug pushy with JUST cymbalta. I mean right now what has been working is butran patch 5mcg, gabapentin, and tramadol. That is all the meds I am on, it isnt anything really hard that people abuse. BUT I cannot just go off of the patch without a doctor weaning me and if you go off of gabapentin after four years you can go literally insane. Not safe, and he didn't seem to even care or try and get a plan together to wean me off of them and onto cymbalta. I literally have no doctor prescribing me any of these meds. My Dr in WI will not call me back, I have called the office over and over. She sent me to WA with 3 months of meds and I will be out soon. 

I have another appointment today with a pain dr and I am really worried it isn't going to go well. I want relief, I have tried many things. I just don't know how this man could judge me so harshly. I am not "very depressed" pain makes you sad, it takes away a huge part of your life but I am not depressed in a clinical sense. I am fighting to get better, I am hopeful and he just really made me uncomfortable. 

 

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Hi StephaniaWi

Wow, you have been through alot.  I can relate to this. I have had pains generally in my hands and wrists to my shoulders, neck and back. This has been an on going battle for over 20yrs.  I only got diagnosed with Fibro Aug 2014. Since, finally putting a name to my pains, I then went onto Cognitive Behaviour Therapy(CBT).....mindfulness of the thought process and also started on Ayruvedic herbal remedies along with massages.  Although I found the massages very painful, the herbal remedies are helping in way that my Dr told me at the start that he won't be working on my Fibro but balancing my body with changes to my diet and herbal meds. I can say to this day 90% of the pains I have had for over 20yrs in my neck, shoulders and back have reduced, but the pains in my hands have inceased. My hands have got weaker as I can't hold things for long and get tired so quickly.  This is a slow process so will see how I get on.  I only started this Ayruvedic Feb 2015.

I still have problems with my sleep and the heat my body produces and this too interfers with my sleep.

After years of having anti-inflammatory meds of which I stopped vey quickly because of the many side effects, I also had alternative therapy like acupuncture, reflexology, chiropractor, pain management, chinese herbal remedies and many more.

So far my recent Ayruvedic treatment is helping me, but I will report back when I hope I will be pain free.

Gentle hugs to you and hope others on this forum can help and give you advice and support.

Take care wink x

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Hi StephaniaWi:  yes, I can very well relate to you, and am so sorry that you are getting more Stress, as this in itself is going to exacerbate your already existing problems.   I have not had half of your Medical issues, and am thankful that I havn't, as you have suffered too much already for your age.

As for your query re Cymbalta....I think this Dr agrees with y our diagnosis (otherwise he wouldn't want you to take Cymbalta, which I have read is only used for Fibro??)...but when I tried it, all it did for me, is actually made me feel Depressed....I just cried over nothing, all day long....and have only taken 2, stopped for a week, and took another 2...hence they go back to Pharmacy !!!

I take Gabapentin and an anti-inflammotory , and sometiimes a Valium when I havn't had a physio for a week or more, and my neck becomes stiff (which results in all other probs), so I agree with what you find to help you.  I'm not sure where you are living, you say WA, but is that WA in Australia, or elsewhere?   It is a problem, if you cannot get your present prescriptions.....let me know where you are living, and if in same country, we maybe able to help re this problem??

As for "the treatment" that this dr gave you , well I can relate to that , too.  I was referred to a Pain Therapist/Pyschiatrist, who told me "it was all in my head, and what I told him re my pain areas, said  "they didn't exist...no such thing"...you can imagine how I felt, after taking 20+ years to get a diagnosis, and thought  "b,,,hell, here I go again, another Roller-coaster coming up"...so after the 3rd visit (at my own expense)...didn't go back....and found a Psychologist, who understood Fibro, and just spoke with her re my personal/emotional issues......basically to prove that I had Tried.......so continued on with what I knew to be working for me..hoing this helps a little, and know that we are all with you, and will do our best to support, and be there with you...........Bron

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I am in Seattle area of Washington in the USA. 

So I did go to the other doctor and he will prescribe my medicine. He is more reasonable. He said that cymbalta is an option for me. It will improve my mood and I will feel less pain, but if I am not comfortable with it then I do not have to go on it. He kept saying over and over that a positive attitude is mandatory. Do not sit and think about my pain, he is glad I work full time so I keep busy. I have to keep moving. He says the hand I was dealt with the horrible uncurable disease Wegeners and now fibro is just what I was given and I have to keep going. He said I should talk to a psycologist that deals specifically with chronic pain patients.

He disagrees with my last pain management doctor that I have another condition. He said I do have fibro. I guess that is just always hard to hear because it isn't curable and sometimes you just feel like you cannot keep living in this much pain, like really this is what I have to feel like for the rest of my life? I have to keep hopeful that swimming, healthy eating an anti-inflammatory diet and everything this will get better. Right now, I often feel like I have been hit by a truck. Maybe the sleep study will show something that I have and it is making my symptoms worse. Just need to stay hopeful.

I hear you though on doctors thinking it isn't real. It is hard enough to live with this, I do not want it, I hate it. It holds me back it knocks me down, it is an everday fight. If I could get rid of it I sure would. I do not think it is a bad idea for me to see the psycologist who knows about pain, I think that talking to someone who understands could be beneficial. I think you sometimes get overwhelmed with this disease and your friends/family whatever cannot really understand. The only person I feel understands is my best friend. She is thin and has no health problems but she gets it anyways. Whereas the rest of my support system doesn't really understand. You look fairly normal, why cant you do everything. I know once in awhile I wish I had someone to talk to who understood. It does help.

 

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I have been interested in ayruvedic before. I just haven't gotten the energy together to actually try it. I haven't seen a holistic doctor yet, though I want to but my insurance will not cover it and I just have never had the money. My Wegeners costs me my out of pocket maximum every year and drains me financially. I found this year my insurance is covering naturopaths, so I am defintley going to see one of them as soon as I can. I wanted to see if I could find one that knows about fibro, and see if they have some ideas. I honestly think my hormones are wacky and I follow so many natural health pages on facebook and whatever about how you can balance your hormones naturally but I dont really know how they are off to start. 

I have horrendous acne and I am like 29 and didn't have it as a teenager. I am overweight and any diet I lose weight like a slug, like 1lb a month sluggish even though I am pretty heavy. So I feel like natural treatments and whatnot are good options. I have been using raw honey and tea tree oil on my acne for about a week. I do not notice a tremendous difference but I think it is helping a bit. I also have used bentonite clay masks on my acne and internallly and that helped. I know for a fact magnesium chrlode spray/flakes and whatever really help the aches and pains but they are expensive too.

So anyways sounds like you are on a good path and I am going to keep ayruvedic on my lists of possible options, I just really found it confusing when I looked into it. A lady with Wegeners actually told me all about it and how it helped her. wink

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Morning StephanieWi;  yes I do understand everything you are saying,  Completely;  and the thought of having to spend the rest of your life living like you are is demoralizing.  After lisitening to others in the UK, are you able to get some form of part pension  (do you have a super fund with Partial/Permanent Disablement) or someway of giving you financial support at this time,  to enable you to take a break for a couple of months  from work , as I feel that you are pushing yourself too hard at the moment.  I agree that we all need to have some outside of the house socializing, (especailly at your age),  but as you have sooooo much to deal with at the moment, I am wondering if you do agree with what you are feeling you have to do?   I was sorry when I had to stop working, and did try other work, on a part-time basis for a few years, but  that got to the stage where I couldn't do that as I developed a Tendonites from using my arm ligaments too much....However, I really do feel in myself, that as Fibro is becoming too common (should say too commonly recognized), and more research is being done, that you will end up being rid of this condition, due to being so young???  Never feel that you are alone, as you know you can always talk, and keep informed by venting/blogging on this site, or even sending me emails via the Private Message box on the L)  side of this (in my blue box).....will be waiting, as it does us all good to talk with others wo have trialed all that has been suggested, and finding ways to help ourselves. One supplement you may want to start using is  Magnesium (the one I use has other additives of VitB12, vitD and VitC.....called Bio-Magnesium here in Australia)  Another big aide for tired muscles is a good soak in the bath with Epsom Salts added (don't have the bath too hot though, as I find it sets my nerve pain off). I was also thinking, only last night, after seeing an add on the TV re a supplement that is recommended for the Menapause, for the Hot Flushes....this is what disturbs my sleep, mainly,,,,the continual waking up from feeling too hot, and then I get cold....so am going to buy some , and see how they go?   Ok, think I have put you through too long a read for this time, so will sign off, until next time............a few gentle hugs as others say and a smile....Bron

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Well in USA we have disability but it is really hard to qualify, even when you are really sick. I haven't thought much about it because I want to be able to make enough money to have a life and the amount they give you is really tiny but I have seen others fight to get it. I am not sure how successful people with fibro are here on it, people with active wegeners can sometimes qualify. I had to be on short term disability through work when the wegeners put me into ICU and I was on oxygen and everything. I haven't had to go back on it since then though. I have gotten into flares with the fibro where I just felt like I couldn't keep going, but I did. I was going to work and then going to bed and that was it for a couple of months. I went to acupuncture and that seemed to help with some of the fatigue but yes I was sitting in 2 epsom baths a day and still to this day most mornings, I wake up feeling like a truck hit me. I go into the bathtub and dump epsom salts on my legs and rub it in a bit with warm water and sit there. Try to pep talk myself to get through the day and that I can do it.

Really kind of a sad situation but then again my doctor the new one at least he said I have to keep busy, have to keep working. I KNOW what you mean about tendonitis. I get repetitive strain injuries so easy now!!! I have a really expensive keyboard because I blew out my pinky finger. I have damaged my thumb before. Damaged my wrist. So I have all of these funky devices at work to try and help my poor body from getting more and more injuries. It seems to work, all my ergonomic stuff most of my RSI injuries are gone but I can get one really easy.

Also, I get acute injuries way too easy now. Like just carrying groceries can set my arm off and hurting for a couple of days, Like I pull muscles really easily. It is a weird thing to deal with. 

I was really good with my magnesium before I left Wisconsin. I left a lot of my supplements behind but I have more of everything now. I am moving from my temporary apartment tonight and tomorrow into a house I rented. I live with my boyfriend of 3 1/2 years. He doesn't get it. Which in a way is ok because all the hell I fought through was with a different guy and he was great about my sickness, with the Wegeners almost killing me I mean and it drove him insane to be helpless with all of it. So this relationship is different but more lightweight at least. We both transferred with work. I am a buyer for airplane parts. Very stressful but interesting and most days the time flies.

Now that we have the house I am going to be strict on my diet. I did the AIP for 28 days straight and I felt a bit of relief. I think it is worth exploring. The leaky gut thing with the autoimmune and now fibro, I have a list of supplements many of which are also recomended for fibro I have ready to take. I need to get some bentonite clay too. I do also use lavendar essential oil for headaches, that helps a bit too.

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Hi StephaniaWi;  sounds like you are an intelligent lady who knows what is happening, and where to turn.....perhaps just keep sending messages/talk when you feel the need, via private messaging via the side box on the L), if you want to?    Do take care of yourself, as you seem to have had enough issues for awhile, and remember, as you are young still, there is always plenty of time......Bron

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Could it possible be the gabapentin that started onset of problems. It took 

Me 5 years to realize that started all my health issues. Even to increasing pain to excruitiating and unable to move. I wore out adrenal glands, hormonal imbalances, misdiagnosed fibromyalgia, Addison's disease which is autoimmune, low sodium cardiac problems, chronic infections, upper respiratory infections, and more. Started tapering off gabapentin slowly against my Doctors opinion. Losing weight. Besides going through a withdrawal process doing great! Good luck. Ask your doctor and never just stop. Slow taper as in as low as 10-100 mg every 2-4 weeks. I was in 3600 mg and within days from multiple systems shutting down! Think back to origin or beginning of problems