Feeling rather lost

General
1

My girlfriend is 19. We have been going out for about 7months, so we are very early on in the relationship and yet we've had a lot to deal with. In January her father died and in February she was diagnosed with FM. She's still having tests run to rule out other conditions. I don't know if its because not a lot is known about the condition or if it is our age but she doesn't feel like she's being taken seriously and is being palmed off from one specialist to another. I try to make it to most of her appointments (my sister has spent most of her life in and out of hospital - its good to have someone to take notes and ask questions) but its impossible to make it to them all.

I've found the leaflets we've been given at hospitals not very informative, they don't really give much advise on how to cope with the condition from day to day or what support is available. My girlfriend is very down at the moment because she feels like her life is going nowhere, I do wonder if she is depressed. When we first met she had mild back pain, it didnt restrict her from a whole lot, now it seems like the condition is restricting her every action. Today it took about two hours to help her out of bed, get changed and go downstairs.

I feel rather useless at the moment because I don't know what to do or how to help.

I'm sorry if these seem like negative question but from your experience how bad does this condition get on average? How quickly does it develop? and how often are 'good' days?

2

Hi Greg,

Welcome to the group, and thanks for posting! Your girlfriend is very fortunate to have you, and I give you so much credit for joining our group in attempt to help her, and to have a better understanding of her illness.

Here are some links that may give you a better understanding.

http://www.painaustralia.org.au/images/pain_australia/Australian%20...

http://health.nytimes.com/health/guides/disease/fibromyalgia/print....

Those are some of the best articles I have found to date.

Unfortunately, most of us seem to have been 'dismissed' by Doctors, at any age, but it seems as though the youngest are the ones seldom taken seriously. I always feel that a Rheumatologist is our best hope, one that specializes in Fibro would be even better.

I am not that familiar with the health system in the UK, but hopefully she has a Dr who is willing to refer her to one.

Though I am not a Dr, it seems that depression goes hand in hand with chronic pain. Many are given drugs like Cymbalta or Savella.

There is no way to answer most of your questions, as this illness is so unpredictable, you just never know when to expect a good day, or a bad day, little logic can be applied, though I personally feel that weather and barometric pressure play a huge part in how we feel. Stress, conflict, repetitive movements, can surely bring on the pain. Walking, stretching, hot showers and baths, heating pads, rest, proper sleep, a relaxed atmosphere, a good mattress... all of these things help.

Greg, I hope that this has been of help to you, surely others will gladly share their own personal thoughts.

Wishing you the best,

SK

3

Greg, the fact that you care and want to help her is extremely important. A lot of us have dealt with family members who don't believe we're sick. I have fibro but also have Ehlers Danlos Syndrome. Doctors palm off people with EDS as well and know even less about it than they do fibromyalgia. A caring doctor is extremely important with the care of any illness but especially one like this, but they're very hard to find. I don't remember who said it in this group before but remind your girlfriend, that the doctors work for YOU not the other way around. Some doctors are good at making us think that since they're supposed to know about medical issues, that we have to believe them and listen to everything they say. They don't know everything though, even about medicine. I admire you for being so supportive as fibro is not easy to deal with but you seem to have your priorities straight. It's the person that's important. Dealing with the illness is just part of helping the person you love

As SK said, this illness is so unpredictable. It's hard to know when a good day or a bad day will happen. For me, I think it came on gradually but I don't really know when I noticed it. All I knew was that I hurt, all over, every muscle and joint, just about every inch of skin. The pain was so bad, all i could do was lay in bed and try not to cry. I had a friend already who had it. She recognized it in me. My doctor sent me to a rheumatologist who knew about fibromyalgia and it only took her a few minutes to recognize it. I take Gabapentin but different medicines work in different ways for some people rather than others. Check out http://www.butyoudontlooksick.com/ and look up the Spoon Theory. It helped me a lot. Stress seems to bring on more bad days for me, as does not getting enough sleep. It's hard to sleep well when you hurt all over though. I hope you both find ways to deal with the pain and thank you for being such a great guy. It took my husband a couple of years to admit I was sick but at least I know he loves me. Hope you all have a good day tomorrow. One day at a time is what works best for me anyway.

Susan W aka waterswaves

4

Greg

Asking questions as you are now doing is the way to go. I don’t have the answers but stay together in your search for treatment that suits your girlfriend, we are all a little different. we have all gone through this heartbreaking journey to find some way to still live life and accommodate this condition. Sadly there is not much acknowledgement from others about our pain and suffering but gradually we manage to learn to live and adapt our lives to this experience. You and your girlfriend have my best wishes. keep asking questions and stay strong. Barb

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How terribly nice you must be. We all need understanding partners. It took my bf awhile to grasp all the symptoms and all the drs. He has really become a great caretaker. It makes the good days all that much better.



Take care and congrats.

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Hello Greg

I was proofreading my response to you when it suddenly disappeared. I will have to try again tomorrow to write you.

Rachel

7

Hi Greg! It’s great that you found us. I am very sorry that your girlfriend is having a hard time. And Im sorry you are feeling so helpless. We understand that it’s not all about us but its also about those that love and care about us too. You are going through something also.

I had no support for a long long time until I found this sight. I wasnt even going to get on this site. It was hard for me and the last thing i wanted to do is talk to a bunch of strangers about this. I eventually did it. It was the best thing I ever did! Please encourage your girlfriend to just get on here and check it out. Give it a try. Knowing that there are others that are going through the same things helps tremendously! We get on here and VENT, LAUGH, CRY give eachother advice, ask lots of questions and become friends on here.

She will learn sooo much about her condition. She can ask as many questions as she wants and will get answers! : )

There are people on here from the UK and some are my friends! : ) I go by fibroerr ( Lisa ) I will put in a friend request to you . I will be happy to be there for your girlfriend and help her along the way. For now you should stay connected to this site. You can learn a lot on here and knowledge is power: )
Take care and hope to talk again. Fibroerr ( Lisa)

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Greg,
A warm welcome to the group! I am new to the site in the last couple of days and have already met great people who understand what I am going through. I have had FM for about 15 years. My doctors treated the symptoms, but it wasn’t until I read a checklist of symptoms for FM that I put it all together and took my suspicions to my doctor. What your GF is experiencing is not uncommon as there are people in the medical profession that do not believe that the syndrome even exists! It makes it very frustrating to attempt to get help. That is why this site is so valuable so people can share their trials with others who understand. I wish I had found this sooner as going it alone is a heavy burden to carry.

I will send you a friend request. I’d love to help support you both.

Jrratis

9

http://www.fmaware.org/ http://www.fibromyalgia.com/

Both links are non profit fibro associations and have all the information one can want plus, you can google it or any other disease they might think she has. Just stick to non profit association or well respected like webmd, mayo or any well known hospital or site.

Polymyalgia Rheumatica can be mistaken for fibro but it has specific tests that can identify it. I included a link about it plus any other autoimmune disease she may have. http://www.rheumatology.org/practice/clinical/patients/diseases_and_conditions/polymyalgiarheumatica.asp

Personally, I think most important thing you can do is just listen to her and encourage her to talk about her feelings. Women, unlike men, work through things by either speaking about them or using tools like this forum. We often repeat things because it is our way of accepting and working it out emotionally.

Since you have sister who has been in and out of hospitals, I am positive you have some understanding about how health system works. As long as doctors are trying their genuine best and listening to her symptoms that is a good thing. Ask her why she feels they are not listening to her and maybe you can help her work out a way to voice her concerns in way to be heard. I know my husband is huge help when I am stressed out and I know I am not explaining myself well. He presents to me ways that I could handle it, such as one of best pieces of advice is to just listen when you see a new doctor so you get a feel about how they handle things. Like do they look at just the test results or do they look at the entire picture of how your gf is doing? When they say something, ask them why they believe that to be true. Of why are they leaving out part of her symptoms as means to explain what she may have. Of course it is always possible she has separate things going on too.

Plus, right now she is grieving her father death which can bring up all kind of issues especially if this is the first big death in her life, or if she could not say everything she wanted to before he did die. She might want to go in counseling for a bit since it is a lot to deal with death if her father meant a lot to her and being diagnosed with chronic disease or just having health problems.

It sounds like her GP might have felt she most likely has fibro but since they are still looking they clearly think it might be more or something else...which is a good thing in my book. So try to help her be patient since you want the right diagnoses so her treatment can be correct. Like if it polymyalgia vs fibro there is treatment for few months and then you can be okay.

As to your questions about good days etc...each person is different and those sites will give you the averages. It is chronic disease and people live and work with them all around you. Now you just might become more aware of those with them. I have lupus and started out very sick but eventually I went backpacking and hiking again plus had a part time job which i often worked full time. So one can have a very good life still and there is no reason to think differently.

I am sorry about her loss and think it is great you are there by her side.

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Welcome to you both. I’ll send a friend request too.

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Greg,

Thank goodness your girlfriend has you to support her. My fiance brought me to this site as I have Lupus and was also just diagnosed with Fibro. The website www.butyoudontlooksick.com is a great way for you to understand how she is feeling. Last night I printed out The Spoon Theory, and took it with me to our family dinner. It was a real eye-opener for them. The combination of Cymbalta and Gabapentin has helped me with the pain. I recently had my best friend commit suicide and had such a bad flare from the trauma I lost my job. Your girlfriend has the double whammy of losing her father and the recent diagnosis. She will have a lot of bad days for a while, but your support will make all the difference. Get her on the site and get to know the great people here. Everyone has a bit of insite to share and all the love and listening you need.

Have a blessed day,

Shelly

12

Hey there,

I think the answer to some of your questions is that it varies from person to person. Some people are lucky to have one good day a week, others are unlucky if they have less than four good days. When they have figured out a good medication regime it is a lot better because the bad days are not as bad and less frequent too.

You will be pleased to know that fibro is not exactly a degenerative condition. Yes, it does go through cycles of being good and cycles of being bad, BUT it is not life limiting or restricting. In short people with fibro die WITH fibro not FROM fibro. That being said peoples symptoms can develop at different speeds, Not everyone will have the same symptoms.

I think that almost everyone with fibro has depression of some kind, even if everything else in their life is brilliant, simply because being in pain and being tired cause you to be depressed. She probably is suffering from depression to some extent. Part of the treatment for fibro is duloxetine (cymbalta) which is an antidepressant as well as a pain killer. I am sure that she will benefit at least a little from it. Some other pain killers (tramadol for instance) have antidepressant effects as well so with luck that side of things will improve when the meds are in full swing.

DO not feel bad about not being able to get to every appointment. I know it can be nice having someone with you but secretly she may be glad she can go to some alone, simply because there are some issues that are best discussed with a doctor and yourself being the only people present. For example some people find they have urinary problems. Also I suppose one thing females would want to know is what this does to fertility and the ability to carry a child to full term. I am sure it is something that she will discuss with you as well, but maybe it will be easier when she has the answers herself.

By the sounds of it you are being a great and supportive partner, and that is the best thing she can have right now. I know that some days you will get impatient with the condition, but remember that the condition is at fault, not her... I hope that makes sense to you. My partner has been with me since I was 17 and helped me through this (I am 22 now), I was diagnosed when I was 19 as well, so your situation feels close to home. If you ever need to talk to me or my partner then let me know. He has an account on here so I can get him to come on and talk to you on that.

Mikex

13

First of all, welcome to our group! I think you will find many friends on the same journey! I have had fibro for many years and I still learn from all the caring people here.

Oh Greg, I am so sorry that you and your girlfriend are going through this! It's hard to see someone you love go through pain and be unable to help. My husband wants to slay the dragon and make it all better for me, and he goes through similar situations. I get down when symptoms occur and I don't know what to do. The best medicine is for him to hold me and remind me that we'll figure it out together. Massages from my husband are wonderful in easing the pain - that's another way you can help. My husband has been unable to go to my appointments, but in the evening he asks how it went. That is so encouraging to me - it shows interest and concern. It's a verbal hug!

Right now, book on fibromyalgia and reputable online site will help you get information. That is so valuable, as knowledge reduces anxiety and creates problem-solving rather than sitting in the mire of discouragement.

I hope this helps. Please let us know how you are both doing!

Hugs,

Susan (Scribelle)

14

Greg- the best medicine right now for your girlfriend is having YOU! You are seeking answers and want to know all you can for her. We all react differently when we get a confirmed diagnosis. Denies, grief, depression, frustration and fear. Being so young doesn’t help matters. Everyone has given you great advice and I would take it and keep asking questions. There is nothing better than a supportive significant other!!! Kudos to you and I wish you both well. hugs~ Sandi

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Greg, I heartily agree with the advice Sandi has given you.

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Hi Greg & welcome !! How wonderful that you are helping your GF, your support will make a huge difference.
My fibro became full blown after the death of my father, as well as other things, but learning to manage the stress is very important. Mild exercise, a short walk, yoga, swim… A warm bath, meditation … She has to find the right combination… And don’t be surprised if some days are a complete wash out, especially now.
Finding the right combination of meds, diet, exercise and supplements all takes time, and is trial & error.

How bad does it get ?? Well that’s a hard question to ans, everyone is different, some can still work, and some can’t . I think because she just lost her father, right now is not a good judge of how she may feel this summer. With the right combination of treatments, finding the right balance … Good days can be great.
Morning are hard for most, and the pain & fatigue can result in depression ( Savella helped me )
Your doing great by asking questions, stay connected with us, encourage her to read discussions, profiles, & articles. It will help her so much to know she is not alone, she’s not crazy & she can get through this !

Hugs & blessings
dee

17

Hi Greg,

First hello to you both. I live in the UK and feel in this country you have to keep pushing for answers. I was only diagnosed in January with fibromyalgia but have had ongoing symtoms GF needs to be reviewed by rheumaologist if she hasn't already been. Do not be afraid to ask for second opinion if not happy with diagnosis. I was initially misdiagnosed and was led to believe symptoms all in my head. Felt I was losing my mind. Was eventually diagnosed after seeing ENT consultant for different condition who suggested I be reviewed by Rheumatologist again and arranged this. On second visit to this rheumatologist was diagnosed. Now on Cymbalta which is helping somewhat. She also told me that older doctors still do not accept that this is a real condition despite research to contrary so keep pushing.

Hope this helps you both somewhat. Hang on in there. I will let you know if I find out anymore I think can help.

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Hi Greg!

I was diagnosed with FMS when I was only 17 and I was just like your girlfriend. I was depressed, unmotivated, and thought my life would go nowhere. She is SO lucky to have a guy like you to take care of her and to care enough to find this site and ask questions. Those good days are gonna come around differently for every person with the disease but CHERISH THEM. Don't push her to do more than she think she can on those days, keep it simple but make it fun! SK gave you some great links there, and I think you should read this as well:

http://www.alaskanmalamutesoftherockies.com/invisible_illness.html

Good luck to you and your girl! :)

Kate

19

Its been a bit overwhelming to get so many positive replies off everybody.

I'm sorry I haven't had time to post sooner.

My girlfriend and I have looked at the spoon theory which was suggested, it is a very good analogy and she showed it to her mum the other day. It's been really encouraging to read everything you have each said. Thank you to everyone who has suggested links. Steph (my girlfriend) is currently reading through the replies, I'm in no doubt that you will have a new member joining shortly :)

Many thanks

Greg x