I wish I could say it gets better and people understand and express sympathy for you. In time that may happen but you may learn some people will never get it and continue to show little compassion. I gave up trying to convince certain people of my plight but I appreciate the few who are kind. It helps a lot if they are family members. I realized after some years I just can't surround myself with people who doubt me all the time. I have lost contact with them. One was my husband who had seen supportive of me for some years but then became skeptical and decided it was all a ploy of mine. He became sarcastic about my symptoms. I felt bad about things I could not do.
I felt like I was stabbed in the back. It was hard to deal with. At that time I needed support and he joined the ranks that did not believe me. I am patient with myself. I don't beat myself up over not getting things done or just take longer. I have had so many years to get use to this and you will. Just look out for the sunny days and enjoy them
Thanks for sharing, Dozer. Your comments have helped me cope with taking longer to do simple tasks - as well as handling a skeptical family. I get a lot of comments about my weight and how that is the cause of my problems. I’m looking for those sunny days…
You are so young and pretty to have to put up with so much, I commend you for your courage and strength. You have had a very long, hard road to get you to the right Doctor, one confident enough to challenge himself to help you, by all means, hang on to that one!!
I take Lyrica too, never tried Cymbalta, used Savella, felt pretty good until I started to shake uncontrollably, so that was the end of that. I do not have Spina Biffida, but have Spondyoarthritis, with spinal stenosis, and my tail bone is starting to curl up on me, I know how excruciating that is, and that is like a pat on the back in comparrison to your challenge.
You can't go through all of that and not have anxiety and depression, it is just impossible. There is great wisdom and compassion here, but I do hope that you also have a professional to talk to.
So glad that you are finally finding relief, and I hope that you always will. I hope that you are able to go and do some fun things while you are still young, sounds like it was a very long time coming!
Be as well and as happy and as young as you can! You can talk to me anytime, I have grand daughters almost your age!
OMG YES I got dropped from the pain clinic, dropped because I missed a number of appts since 2009!! I was like are u effing kidding me...I missed appts because I was in too much pain to move, I remember once I was in the ER for pain, right across from the damn clinic and they still made me fight for my spot in the clinic now I get a letter saying Im dropped right before an TMI appointment, like I can give 24 hr notice when I start hurting hours before the appt. . .smh ugh
Now that I am older people tend to accept things take longer. I think when most peopke hit their 40s they hit the same wall ..it does take longer. As for memory gaps those exist too and you do get pardons. I am sorry to hear about the comments on your weight. I have an idea if I ever have the energy .. I would like to begin an illustrated journal with my son of the sunny days. I have always been a pessimist and I think it stems from my dad. He was very cynical. I had an insightful dream last night. I was climbing a hill with my son and I could not do it anymore I was being electrically shocked (?) and I told him to go on. I stood there with the sun in my eyes just watching him. I think it means I am trying my best not to let my fibromyalgia impact him and hold him back. We met up later and he was ready for a nap and we napped together. He was not affected by the electric shocks. I participate as much as I can and I stop when I have to.
Thanks for u response. It is hard not getting support. That’s where I’m at right now. I don’t even think anyone has told me that they support me. I try not to beat myself up but I’m a little bit of a perfectionist so I like to do things my way and on my own. Yesterday I couldn’t even walk down stairs to do the laundry.
I have a lot to get used to. I pray every day for a better day.
You speak with much compassion, wisdom and honesty. So glad I have been able to connect to you and the others on these sites, I also belong to psoriatic arthritis and Raynauds, and I have never communicated with so many good people.
I hope it is not the pain that makes us compassionate, caring and understanding, but lets hope and pray that something good comes out of it, and Ben's Friends is something good!
I hope that you are having a good day and that at least one of your loved ones happens to open their eyes and see that you need support and some help around the house! Just someone taking out the trash and changing the sheets is so appreciated!
SK - i literally teared up for a second. Thank you. Same to you! Thank for u making me feel better about myself today. Hope u have a great night. Xo talk to u soon
I posted news of stem cell research last night, also found out that they are doing successful lab trials on stem cell for pain in mice and cell plantation to ease pain, and one for Crohns. The people in the experiment had been on all kinds of treatments, suffered an average of 14 years, and within 9 days were restored, it shows the photos"!
That relates to huge leaps and bounds for all inflammatory diseases, and fibro is definately one!
There is a very bright light shining out there, so don't give up! There is alway someone here to talk to, someone who is in your shoes, if you have to go to the PsA site and join, tell them you think you may have it, because from the sounds of it you do, keep pushing the Docs for RA tests when they do your blood, find out it you have any Rheumatory diseases in your family, they are hereditary, and they will let you join, there are some very wise ones on that site!
I send you a big hug Kait, you can talk to me anytime!
Oh My! I totally get it! Happens to me with my family too. It is so hard not having friends who care or understand. I hope that people will someday be able to understand and be aware of fibro.
How are you, I cry more when I go through the 2 hour waits at the Rheumatologist than any other time! It is because I see so many very, very young in wheel chairs, the kind of chairs that you never get out of!
Keep on your Doctor, if you don't feel like the meds are doing enough for you, there may be something he is missing, write down symptoms, take them along, give them to him to tape in to your records. You have to be your own advocate!
Hi SK I’m doing okay this week. How are you? I spoke to my doctor a couple days ago because the pain med he gve me ( roboxen? ) didn’t have any effect on me. So now I have something else. Its only been two days on the new pain med so we’ll see…
It may not be a bad idea, my GP sent me, the second Rheum confirmed his diagnosis of FMS and PsA and a couple of other Autoimmune nasties. Even with his referral I had to fill out a very detailed questionnaire and be accepted. He knew what was wrong with me before he even looked at me and at the time I did not know that my Grandmother had PsA, she was old had arthritis, that was all I knew. He is also a Univ. Prof., so I feel very fortunate, but it was the GP who really made the find. First rheum had no idea at all, no clue!
If you find a good Doc hang on to them, even if you also see a Specialist, they are hard to come by!
I hope the meds do the trick, glad your Doc is working with you on those! Feel better!
I am a man and it is hard for me not to tear up at time just out of the blue. It is hard for any one that has not had FM to understand, I know I have it and still dont understand it. Dont give up.
Sorry you suffer with this having a little one, I know what it is like trying to keep up with grandkids, and they just visit! There are brilliant scientists working very hard every day, there is always new research, new meds, new hope.
I’m not having any luck with any of the pain medication ive tired. I started taking tramadol again I it’s just now enough anymore… Any suggestions for different pain meds?
Hi Kaitxo, are you still taking the savella 75 mg ? Have you seen a pain specialist dr ? I can only tell you I brake my Savella in half , I take 1/2 savella, and one tramadol with food ( mid morning ) then 1/2 savella with Tylenol 1-2 hrs later, and the third 1/2 Savella around 4 with food and 600 mg Motrin , I do have Lortab but can only take 1/2, as it does take edge off pain, but it causes a bad headache, most days ( especially this time of year I start my day with a headache so the Lortab is only if my neck ( 4 bad discs ) is really bad. My last visit to pain management they said I can try Nucynta, but I didn’t get it, now I’m wishing I would have tryed it, because the pain is really bad this week. Tramadol seems to be the new pain drug they are giving us, however it really doesn’t work that good, I’m just really trying to give it my girl scout try.
I hope you find what works for you, it seems to be a never ending quest, keep telling your dr. You need to try other things, as far as the savella, I think it helps, just not enough to be taken alone. I just made an apt to see a homeopathic Dr. ( just keep trying to find something that works )
Hugs & blessings
I now take 100mg of savella in the am & around 630 I take another. I take two tramadols usually in the am with all my other medicine. What exactly is lortab? I’ve heard about it. I’ve been gettting headaches a lot lately too…they last about 4-5 hours and nothing takes it away! I’ve been thinking about going to pain management. I’m having trouble with my insurance so ill try when everything is straightened out… Thanks for the reply ! Xo
