I’m new at this… my dr suggested this to me because yesterday at my appointment I broke into tears for no reason. That happens a lot lately. I live with my boyfriend and he doesnt understand. It’s making us argue and I feel like its me because I can’t do as much as he wants. I either " I don’t feel good" or am “really tired”. He makes comments like “oh that’s right you can’t”. I tear up just thinking about it. I’ve been so stiff I hate getting out of bed because I’m kinda of scared to see what the rest of the day will bring… Im wondering my medication salleva is good enough? I’ve been taking it about two months and started 75 milligrams today. I just want to feel happy and be able to do all the things my friends do. I hate feeling different ;( no one understands. My mom doesn’t fully get it either and I barely talk to my dad. How can I get everyone to understand what I’m going through ?..
Unfortunatly the answer to your very last question is you can't, at least not everyone. My mom just ignores it and I thought my dad understood up till last week but its hard to talk to him, only cause he mumbles so much you can't understand him. LOL. I am currently taking savella myself but have been through many meds till I found it, unfortunatly for me it seams to have stopped working or I have built up an intollerance. I feel bad myself cause that always seams to me as well, with the I'm tired, or hurting, but my husband does seam to understand and he doesn't care weather the house is clean or nit but I do feel bad cause I feel like I say it all the time sometimes, and I know he has to get tired of hearing it cause I do. Your savella might not be the right medication for you. I felt so much better when it was working, and your boyfriend might not be the right one for you either. He should be able to understand and accept your limitations for what they are, if he can't there is someone out there who will. And just to let you know I have said the same thing about being sick and tired of being sick and tired, I wonder if that shouldn't be our motto, ha ha. Gentle hug, hope I helped some.
Hm that did help. I figure I’ll give the salleva a little longer. Likei I said today is the first day on 75 milligram and so far today is a good day & I hope the same for u too. I know my boyfriend try’s but I feel like he doesn’t try hard enough to keep his comments in. I’m a little sensitive at times.
Thanks for responding to this. It made me smile. I hope u have a good night 
i am sorry that u r having such a hard time. the only advice i can think of as far as your boyfriend is 1 see if he will go to a dr appt with u so he can hear for himself that what u r going through is normal for people with fibro we have limits. the other is to see if he will look at a website with u that will educate him on your condition. but if u cant get him to at least try to understand a little about fibro than as much as it might hurt i think u need to let him go. the stress he adds to your relationship can and will make your fibro worse.
u may want to talk with your dr about adding some sort of pain meducation to what u take that way the hard day wont b so bad. i also really recomend seeing a therapist. i do and mine helps so much. there r times i have even asked him how to talk to some of my family about my disease. for me i need therapy with out it i would b a mess. i will admit i was against going at first i thought only crazy people had to go to therapy. i now know different.
i hope this helps. many hugs to u as u go through this journey.
I know he has looked up information on his own. Which I thought was good. Having him come to the dr with me is a good idea. I’ve told him he makes me stressed out. He’s very hard headed. I even have a book if been reading and have had him read some parts. It’s new to the both of us and be says he ll be here with me through it… I try to just breath and not let it get to me. I started a new pain medicine today - Robaxin. Do either of u know anything about that or have takin that? I wanted to try an online support group because I have done therapy in the past and wasn’t into it. Also is yoga helpful to either of you? I’ve been trying to stretch twice a day… It helps. Thank u for responding so soon. I’m starting to feel not so alone. Have a good night xo
First of you are not alone. As for the Robaxin I have tried it before I was diagnosed and it didn’t do anything for me. I have done some yoga but I always end up hurting in the end. Good luck to you.
So sorry to hear your pain hun!! I think we all have experienced family and loved ones not understanding and the reality is they may never get it and it's okay if they don't. They do not feel what we feel to even begin to understand and my way of dealing with it is not any advice to give to ppl so I will keep that to myself, lol however as for your meds, give em a try and maybe get some anti-depressants or see a therapist, I know a therapist helped me TONS!!!
Stop saying you can't do this or that and do it. We are the same ppl we were before this hit us just slightly altered which means we have to work harder at being our old selves again but it is possible. I don't know how long you have been diagnosed but the first 5 years is the hardest, this was told to me by my nurse who have FMS and for 20 yrs now, back when she said it, I did not believe her until 5years hit and I realizes I was coming around to understanding how to live with this and that it had been 5 years. . .its been 8 yrs now.
You can be your normal(ish) self again and if your boyfriend does not take the road to learning to adjust with you then you have some thinking to do. It is hard for them to deal with it as I know. But in time they will either come around to it or not but it does get better, I believe it does for all of us if we try hard enough to get to the better part of this journey.
good luck to you and may you feel better soon!!
I was going to say Yoga is amazing!!! The mayo clinic has a fibromyalgia yoga dvd which is great or try any others. They give amazing energy. . .have you tried changing your diet? I eat tons of fruit now, grapefruit does something awesome to me, cucumber water, lemon juice, veggies and little meat, no sweets. . .its hard but it has helped me feel somewhat better.
I lost my bestfriend of 15 yrs because she could not understand what I was going through and although I loved her, I looked at her as a good leather handbag. It's durable, has longevity and gets better with age but it does not go with every outfit. . .one day her strap broke, so I got a new bag. Shitty metaphor to use but its works for me. . .I'm saying, if ppl do not understand then so what because ppl not willing to invest time to discover what their loved one is going through needs to be put on the shelf. . . .
Noone will ever fully understand unless they have Fibro. This is just my experience. My husband still has not accepted that I am unable to do certain things or that I am limited. What I have learned is that if I want him to lessen his expectations for me, that I should do the same for him. I shouldn't expect him to understand something I never understood until I had it. Fibro has made me withdraw from him in many ways, so he already feels like he is loosing me. I am beginning to try to understand what this has done to him and share my feelings with him at times when we are both open. The timing is hard. He is starting to come around a little more. Another thing that gets in the way is the never-ending medication trials. Each med has it's own side effects. I also had a complete hysterectomy, so I am in menopause and my hormones are all over the place. I am practically impossible to live with.
I know I deserve his love and care, so don't think I am saying it's okay for him to treat me badly. He has bad moments and says mean things to me. But, I also see that he tries to understand something he will never fully "get". I am also Horrible at communicating to him what I need from him.
I am trying to either write down my feelings or tell him at times when we are both calm. It's hard to find those times with 2 children and him working the night shift. He wants to understand, as I think so many partners do, but, they either get angry or frustrated because the person they love is practically gone to them. I know I am not able to be there for him like he needs, that's for sure.
Fibromyalgia is not a well understood disease. I have lost a few friends due to it, because they just plain out didn't believe my level of pain, which was very hurtful because I have always been such a strong woman. I gave birth to my second child at home, and she was breech, so it was a 48 hour labor. When I told my friends that I would rather re-live that than go through the pain of Fibromyalgia & Endometriosis, I thought they would understand, but they just thought I was being dramatic, I guess. The thing is, being a friend to someone like me is hard. I have to cancel plans last minute, I laugh a lot less than I use to and my main focus most of the time is my pain and how to get better. This is not fun conversation. I have, however, found out who my true friends are. They are not many, but they are there. They cannot talk to me every day or take me to Doctor's appointments, but they are there. My husband, who I asked, as scared as it made me, if he wanted to re-think our marraige now that I am sick, said, I love you. He is there.
Chronic illness is different. There is no urgency. People don't know what to do. Even if you give them a list, they are unsure of when and where. And, it must be confusing for them to see me feeling great one day and in horrible pain the next.
Sorry to ramble so much. These are just things that are going through my head this morning, as I am in a better place mentally than I usually am.
I recently did a search for poems or letters on how to explain Fibro to our friends and loved ones and came up with a few:
http://voices.yahoo.com/understanding-fibromyalgia-if-friend-or-159211.html?cat=70
this one is titled "how to help a mom with a chronic illness"--I LOVED all the suggestions, but I also think the expectations are very high, so I would not recommend givng the whole list to a friend, but maybe picking one and asking a friend or church member to help out with....
http://tillingmama.wordpress.com/2010/08/05/how-can-you-help-a-mom-with-a-chronic-illness/
and, this is one a friend sent me via e-mail:
By Hannah HillAs a Fibromyalgia sufferer I do not want your sympathy, I just want you to understand who I am because I may forget.Yesterday I may have been limping, today I may be skipping, tomorrow I may be having a sofa day.Yesterday I may have been on top of the world, today I may want to stay indoors, tomorrow I may not be able to get out of bed.Although my pain is all over, yesterday my leg may have been hurting more than my arm, today it’s my head, tomorrow it may be my back.Yesterday I was able to make a three-course meal, today it’s a frozen meal, tomorrow it’s jam and bread.Yesterday I climbed a mountain, today I may manage a mile, tomorrow I may manage a smile.Yesterday I may have been engaging in great conversation, today I may forget my words, tomorrow I may have forgotten we spoke.It's not easy living with Fibromyalgia, even harder when others do not understand you!
I love your handbag metaphor!
I have made changes to my diet. I do feel less sluggish at times. I like ur handbag metaphor also ha
Im only about 6 months into this. I hope it gets better. I have also lost some friends… Im only 21 and I want to go out with my friends and have fun but I don’t have the energy or strength to. It really gets to me at times. I guess they just gave up.
Thanks for ur thoughts xo
Sassy42— I have to tell you that I sent this poem to my boyfriend right after I read it!! Last night we got into an argument because of his smart comments so I woke up not in the best mood today. I like how u said u shouldn’t expect him to understand something you never understood until u had it. I couldn’t image having kids and feeling this way. U are strong. Thank u for ur thoughts and the poem. I hope u have a good day xo
Its so hard to get people to understand.I know , I no longer have any communication with my brother as he said "You are just a lazy cow".
I hate to let people down because before I got this illness I never stopped still .I loved dancing,going to the gym and having fun.People still think I can do these things because "I look well".Now its a case of can I get out of bed today?I have to say no to lots of invitations and Im convinced people think I am just being anti social.Im not looking for sympathy but a little bit of empathy would go a long way.
I have seen a few videos on you tube and I have played these to a couple of my friends and I felt they had a better understanding of what I go through on a daily basis. Hope this helps .Gentle hugs to you from someone who is in the same boat as I am
Hello everyone,
Most of the Doctors don't agree on the definition, the symptoms, we are constantly doing research ourselves because we just don't fully understand it. FM doesn't come with a clear cut plan of action for restoring ourselves to full health because no one is sure what causes it.
Many Physicians do not even like the term, because they feel it is a trash diagnosis, or only the very beginning of a diagnosis.
The best advice I can offer is to constantly keep having the blood test for autoimmune disorders done. It may very well be that FM is only the beginning of the diagnosis, as it was for me.
These feelings are very much the same of anyone who is sick, but the unpredictability makes us seem like we are 'faking it' to others, even those we hold dear, and no one can hurt us like those loved ones when they fall short of the courtesy, compassion, and thoughtfullness that they should be showering us with and in.
Start writing down symptoms and questions to take to Dr. as even the slightest thing bothering you can help you further the diagnosis, like dry eyes, joint pain, rash, aversion and pain in hands to cold exposure... A good anti-inflammatory is a must. Finding a therapist is also very good advice, no one needs one more than one who suffers chronic pain.
Do you go to a Rheumatologist?
Perhaps you could take your Mom with you to your next Dr appointment, they are usually far more compassionate, and willing to go and learn, than a man...
Good luck to you, We are all here for you!
SK
Hello there - I took my husband with me to my appointments with the rheumatologist so he could ask questions and learn about fibro. So far he has been very open to learning about my limitations and being empathetic. However, the rest of my family is not very empathetic and thinks I’m making up the fibro. While it is very hurtful, I don’t try to change their minds - I just avoid the topic in conversation and keep my distance. I’m not sure if that is helpful to you or not but I wanted to share. So I recommend taking your boyfriend with you and giving him the chance to learn and ask questions. I take Savella and have not found it to be helpful. I’m going to ask the doctor to change my medications.
Best wishes and good luck!
That really does suck but you are not alone. I am almost 30, will bring in the big 3-0 end of July and I will most likely do it alone. I don't have many friends anymore because my anger makes me snap out on everyone that pisses me off and it doesn't take much esp when I am in pain. However I have learned to accept it, ppl change and its okay. I know that those who did not stick by me through my rough moments were not really there for me at all because there are the few who are still here who knows my anger and understands as much as they can my pain.
I can no longer wear heels anymore and it sucks, I look at my pretty dresses and know I cannot wear them anymore unless I have cute flats. . My friends asked me out the other day and I had to decline because I knew where they were going and that I'd have to be all dressed up and I couldn't. . . I had to have a hysterectomy because of fibro, it's taking my womanhood away BUT there is always a but, things will get better. You will adjust to living the new life you have and you will find new things to enjoy..you can still go out too, don't deprive yourself of fun because of fibro. .. even if you can't go out all night you can for a little bit. . or get together with your girls and have dinner. .my few friends and I do dinner and movie nights all the time, we relax and wear sweats and kicks and girl talk over dinner, I go to a lot more concerts now which is always fun. . .take this down time to get into the gym and workout that stress and pain. . .the first few yrs may be hard but everybody adjusts to change and you will too. . .as cliche as it sounds, positive thinking yields positive results. . .
great response. I understand all of what you said and what you go through, I don't have a husband but I get it. Doesn't it suck when ppl you think are friends tell you "stop being so dramatic" when you say you are in pain?? SMH I have a friend coming up this wknd from Chicago and even though I told her i'd be around, I know I will be in too much pain to go out with her. . .it's life, our life. We deal and I think under the circumstances, we deal with it quite well.
Good luck to you.
I know Mo, you can't even make plans, because you just never know what is in store, though you have a pretty good idea. Even the Doctors who are supposed to know more about these diseases, and disorders than we do hold our feet to the fire to show up for appointments, needing to give 24 hour notice. Like we have a crystal ball attached to our heating pads!! Maybe the best thing to tell them is that the whole household or apartment building woke up with pink eye, they all fear that !!! LOL!!!
i just recently been diagnosed with FMS (Fibromyalgia) but i have had 41 surgeries in my 21 years of life i was born with a birth defect called Spina Bifida and i also have a long list of other medical conditions in my life i have been in CONSTANT pain for 10 years with docs just giving me stronger and stronger meds till not even narcotics really work for me because i grow a tolerance to meds now, and have had docs say i was dependent and getting addicted and family and even docs telling me for those 10 years theres no way im in so much pain i need more then usual meds because usual dosage and meds to help pain dont help me..even with narcotics i need to double just to take the edge off untill they couldnt give me anything stronger and they all thought i was crazy and just a druggy ive tried many pain docs many look at me and my chart and deny helping me cause their afraid theyl only make things worse cause im so "non- textbook" and complicated..untill i finally found a doc to take me and he found that.. now im havign days i dotn have meds thanks to trigger point injections and Cymbalta (i also have depression.anxiatty)and Lyrica and im starting to feel better then ever