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26 male new to FM community not much support in Hawaii
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peteraduan posted:
Hi everyone, just looking for some companionship and support. I'm in Oahu, Hawaii and there aren't really support groups or that much local info that I can find and I don't really have any friends or anyone to talk to here even after a couple years or really gotten to enjoy the island's ammenities do to my FM.

I'm really struggling with my recent FM diagnosis I just turned 26 and have gone undiagnosed for at least 12 years. I became so sick recently I lost thirty pounds and am in so much pain that I dragged myself into the hospital and the doctors finally stopped saying "you look young and health," and finally did something. I also have Bipolar 1 disorder with IBS along with this. Fibro feels like it has stolen my identity and my life. I'm a musician and can barely play music anymore from the pain and fibrofog. I feel like a athlete robbed of his legs and no one acknowledges this.

I'm really struggling in my love life too everyone I have loved or been in a relationship with I've lost because of BP and FM I pour my heart out trying to be as much as I can and to treat them better than ever and bring chivalry and romance into the relationship. They just get sick of me or my depression or see that I have 0 to offer financially or think I am lazy or a hypo or what future do I have to offer. I just feel so alone when all I want is to feel love and comfort.
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crystalscats responded:
Your're not alone here. We all suffer from FM and have other issues as well. I have FM & IBS too. I also have relatives with Bi Polar so know what that is like too. Sometimes it feels we are so alone but you're not. I am glad you reached out to this community. Read the tips and resources and others posts.

Do your doctors have you on anything for the FM? Are they treating your depression as well? A lot of us have depression along with the FM. It is hard not too with the chronic pain and other issues we seem to have. Keep your chin up at least you now have a diagnosis. Many here are still trying to get that. We also have a few good men on this site.

Crystal
 
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xperky responded:
Hi Peter. Keep your chin up. There are so many helpful tips and support on this site.

As for finding companionship - there is someone out there for you. There is someone for everyone, and you will know when you find each other.

I used to be a classical musician. Now, with FM, I can't imagine keeping my arms up to play the violin like I used to! It is too much just to wash my hair twice...lol.

Keep looking for a rewarding career and try to keep music in your life as well. Musical talent will bring you joy all your life, even if it is in listening or composing more than playing.

Nice to meet you.
With Compassion,
Margaret
 
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booch007 responded:
Peter,

As I read you letter the thing that looks most powerful to me is the BiPolar issue. You need a good mental heath assistant here. The right meds and support group. If the Island doesn't offer it, maybe another island would.....this must be handled right.

They say that we in FM have a chemistry imbalance, well that is what BiPolar is as well. Being *out in one is going to make the other worse. There is a big medical center there on one of the islands (bet it is the main) I saw it myself. Very good reputation...you should get in there and be seen and tuned up.

It may take time, but skype and email after an initial reveiw will probably be done. Call them and work out something for you.

YOU MUST be proactive to get yourself better. You are young and once one thing is better the other will follow a bit.

This life is not easy, and now having our dragon following you around and creating the pain it does....there is a tough road ahead. BUT this I know. IT has to be you that fights for you.

So, my thoughts are the BIG hospital (Hawaiin name) should be where you arrive for care first. Go there not on Oahu, then once they have you right...follow up locally or via computer with the staff.

At times people here have to go miles to get to a better facility for care, a bad fit with a doc, no one getting the diagnosis....mental health is also a bit challenging and with FM now in the picture..a skilled medical person is going to be best found at a large teaching hospital/ medical center. Large weight loss is no good for FM, it is a catchh 22 with the muscles......so seek help please.

We are always here...24/7..open all the time, but we are limited in what we do, other then a great shoulder. Hugs from me.
Hope I gave you some ideas. Place a memo out to Dr. P here too.....see what he says?.....................Nancy B
 
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dollbug responded:
Hello Peter and welcome....MiMi in NC...sorry that you are not feeling better....but I am sure that you will find something that will help you cope better...

Dealing with the wrath of the dragon is bad enough without having other health issues to deal with....BUT as I have learned the hard way....each and every medical issue must be addressed before you can feel better and move on in a positive direction...it is a MUST...

You are not alone....let me assure you....there are people everywhere who struggle with issues such as FM...and there is hope....

Learning how to pace, pace and pace some more is so important....we, FMers, have a very fine line....and when we cross this line....we pay and pay dearly for doing so....this too though is a process that you must figure out....

I am sad that you are so young and having to deal with all of this....just remember though...that it will get better...but you must take control of your health and do the things that will improve your situation....you should also remember that what helps one person may or may not help you....

I got really sick back in 2005....when my life fell apart...had a lot of "issues" going on also....thought I was doing to die before any doctor figured out what was going on with me...I finally took control though...and with my doctor's help....we finally got on the road to recovery and feeling better...but again....each and every medical issue had to be addressed...

Check out the info under "tips" and "resources" as I am sure you will find something that you can try...

I have tried different kinds of medicines....but did not find any that really helped me without causing side effects....and I did not need another thing to deal with...

I eventually did my own research and finally found supplements and vitamins which help me "control my FM pain"....I am still having a major issue with the "fatigue" part of it...but at least I can control my pain..

I would also encourage you to be sure and ask your doctor to check your Vitamin D level....which is so important for a lot of people these days...it is a simple blood test but you MUST ASK the doctor to check it...
low Vitamin D can cause additional pain for some of us and it can also affect other illnesses as well..

My daughter's level was 2 and my level was 12 or 14...the low normal is around 40 and goes to around 90....what is "normal" for each of you....perhaps no one really knows....and I am sure this is different for everyone also...

Take it one step at a time....there are no quick fixes...but there is hope for all of us...

Hang in there and take care...

Let us continue to hear from you...


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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peteraduan responded:
Thank you everyone for your responses. I can not begin to tell you the warmth in my heart and a little bit of my pain melt away from your words of encouragement and care. To have someone say something genuinely nice to you or to worry for you when they don't have to at all is wonderful gift.

As for some of your questions. I'm under treatment for my FM and BP they have me on depakote right now to safely intro me on cymbalta and flexeril.(they're gonna start that in a couple weeks.) I take tramadol as needed for pain at the moment. But with the IBS just the depakote and tramadol alone right now are so rough on my stomach. I've been getting side effects and mood swings like no ones business but trying to fight through if it might help.

I live on Oahu and have Kaiser through medicaid so I don't know about accessing the nice hospital on the Big Island.. I haven't worked in a year cuz of fm and can only get health coverage through medicaid. I'm going through my disability evaluation next week with SS maybe that will open up more options. Going through department of human services is brutal because I'm so young and look fine so I face a lot of scrutiny.

I have not had my Vitamin-D checked but will ask about it next chance I get.

Sorry need to get a couple things out here.

Yesterday my girlfriend almost broke up with me. She said "your depression is crushing me. I'm usually a pretty happy person and I've been through bad things and bounce back. But this I don't know anymore." We live together and I have to decide today if I'm moving out. I don't really have anywhere to go accept my grandmothers love seat that I don't fit on cuz im 6 feet tall with wood armrests not really a good FM bed. I don't have friends or any other family to stay with I have $0.55 in the bank and literally no food not even ramen or canned. My credit sucks cuz I've been trying to power through FM not knowing I had it for 6 years so im doing terribly financially to put it lightly. I was going to have to borrow some money from my parents(who live on the opposite side of the country) to pay my rent tomorrow but I think the relationship(mine and gf) has ran its course. We both love each other very much under different circumstances I think it would have worked out but I just got my diagnosis not that long ago I just can't see how we would be better off 5 years from now she can barely hang now. And she should be with someone who has energy shes 25 beautiful, educated, with a good career going and I'm the opposite. She should have someone with more assets emotionally, physically , financially or whatever. In my state I only have my love, care, and friendship to give. I guess in short she needs a "Man" not a "Patient" I'm sorry everyone I'm just so heart broken with nowhere to go... I'll post back next time I can.
 
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xperky replied to peteraduan's response:
Peter - maybe she loves you for you! I hope things work out for you. It almost sounds like you are pushing her away. I'm sure you have a lot to offer. You sound geniune, intelligent and compassionate. Those are great qualities for any relationship.

Do what is best, as only you can decide that.

I'm glad you are getting some good medical care. That should start to help you soon, so you will be feeling better!
With Compassion,
Margaret
 
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newgrandma1953 responded:
Hi Peter,
I'm so sorry for all your going thorugh now. Please know that you're not alone. We can all sympathize with you and tell you that this is survivable and you can have a life. Take it one day at a time.
Jesus has been my life saver. He gets me over each and every challenge. Perhaps there is a Pastor, or someone of faith that you can talk too. One thing is for sure, prayer has given me hope along with medical support. Take the suggestions of the others and follow through with your medical issues, and the depression.
I will keep you in my prayers Peter. I would suggest if possible that you keep the door open to your family for financial and emotional assistance.
Take care and please keep us up to date on how you're doing. We do care about you and are here to support you!
love, Carol
 
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mnjeepguy responded:
You are in the right place to help you out of this. There is no cure but a lot of ways to cope. Stress and depression lead to more pain. More pain leads to more stress and depression. So what do we do? We do the best we can with the tools we have.

It's very hard for loved ones to understand. I have been with the same woman for over 20 years. When she heard the word fibro come out of the doctor she was completely unsupportive for over a year. It takes time but if someone loves you they will eventually grasp what you are going through. People have a hard time understanding things they can't see or feel for themselves.

No matter how tough things get, find something, anything, that makes you feel good and make sure you hold onto it. It is so easy to see how bad things are and forget what we can be greatful for. The dragon as many here call it, can wear us down mentally to the point where we self destruct. It's up to us to not allow that to happen. I know you are sealing with other issues too with BP. I ave close family members who suffer from this as well. Hang in there man.
 
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fibroinsd responded:
Hi and welcome here...so glad you found us...

I am so so sorry for what you are going through...It isn't easy to have all these issues, ...let alone to be so young with them...

I have lived on Oahu...so you bring lots of memories...It can be a nice place..and yet...so far from so much...I hope you and your GF can get along until you can make a plan as to what to do...To have someone in your life that you love is wonderful, but I can understand her reluctance to want to deal with all the health issues you have. Is there any chance you could get your parents to send you a ticket home for awhile?? You need some place where you can get some support to get back on your feet...

There is a section on here called Member toolbox...found in the tips section..I think...It does have a list of things that people have found helpful...Things like using heating pads..vitamin suggestions..using stop pain ...etc...I hope you can find that.

It sounds like you need a new plan for your life..something that will work with your health issues...and all that takes some time. My kids have gone through their 20's...(one still is) ..and it can be a difficult time...The 30's are much better !!!

I did want to tell you..that one of my kids was on depakote for awhile and really had a hard time with it..so do be careful..It made him suicidal...I have used Cymbalta...and that worked great for my fibro, but others have not had good luck with it..so really let your doctor know if you think something is or is not working for you. I also used flexeril and that was great as far as helping me to get some rest..

I do hope you will stay in touch with us...You do need some help and support right now...You need to figure out what things you can do to get yourself into a better place ...both mentally and physically...You can do this, and things can be better...

cece
Let's put the fun back in dysfunctional !- Mary Englebright
 
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Caprice_WebMD_Staff replied to peteraduan's response:
Hi Peter,

I see you've already found some great support here and I hope you'll keep posting.

Regarding your Bipolar 1, you may also want to post on our Bipolar Disorder Community .
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell


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