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Anyone there? Feeling down abit, don't know what to do.

Feb 26, 2016 5:47 PM

Hi everyone. I'm sorry but I'm feeling really down and fedup with myself. My head is spinning with loads of thoughts and some not to good. My partner don't understand why I am feeling like this, I should be used to this or that's what he think's. I've had a flare-up for 6 weeks now, hardly any sleep and to much pain to function. I can't cuddle up with my partner as my body thinks everything is a knife touching and lava for blood. My head is hurting and lights are hurting my eye's. I'm losing my hair again, so I got bald patches. I look like my doll I had when I was little, after cutting her hair myself at 5 years old. So not a good look. Is hats in fashion at the moment? Or make them come back in fashion?. I took some of your guy's info and suggestions. I too my other half to the DR's so he could learn and see I'm not making up the pain, thought he was fine as maye learn and understand me. He came back and said that exercise would help me, and what's for tea, start abit early so I can cut the veg and notask himas he's busy. The dr told him every thing as well. He explained about the Gilbert syndrome, the bipolar, and the fibromyalgia and rheumatic atheritis in my lower back. I was so hoping he learn something from it. Or as I said we could learn together. He knew I had these problems when we first got together, I told him I was bitch to live with and my moods go up and down. He was fine with it then. I have said if he can't cope then we will split up, I'm hope I'm not being selfish but I can't go on like this. I want to get a parrot or cocktail for company, I can't has cat or dog where I live and haven't got a garden for a rabbit. Animal's help me feel good about myself. But I got told I be selfish if I get one. What about him. I'm starting up my own business, two of them. I got to have something in my life. Sorry for moaning but I really haven't got any one to talk to. You can tell me to shutup. I don't mind, but thank you if you have read this.

Feb 26, 2016 6:23 PM

Your OK..and I understand. I'm.sorry your partner is frustrating you. Let me apologize now in case I missed something in you post. The fog is heavy on me now.. But I do want to encourage you and say that it can be a process for our loved ones to adapt to our new Normal. I've got the same issue you ha e with my mom. So I understand what how hurtful it to not have to support of your family. I would also say try speaking with your partner again but maybe not with words. Example leave some leaflet laying around on fibromyalgia and some of your other illness.
Do you have any family support? If so maybe have them speak your partner. If u can have a. Animal in your home maybe contact an organization where u can go to the animal see it kind of like therapy.
If all.elase fails you can always come here. We are always ready to give you a word of encouragement. I hope this helps and makes since

Feb 26, 2016 6:38 PM

I'm glad you wrote. It is important to talk things out. I know everything can be very overwhelming and frustrating. It can be really difficult for other people to understand the extent of chronic pain. I agree with newfibrogirl About speaking to your partner again but maybe showing them a good website or pamphlet that explains things. Sometimes it is not a lack of caring or patience but more that other people are not educated. I know with myself, I can sometimes push people away especially during flare ups so it is important to help your partner understand how they can help you. In the midst of so much pain things can seem very overwhelming so keep talking and venting if you need to :)

Feb 26, 2016 8:18 PM

Risa, I hear you and I understand. I relate to your feelings of frustration with your loved one. It would be great if we all had a magic wand (large mallet) who said that ? That we could lovingly wave (drop it from the roof) over their head ...who said that? So they could better relate to us. I am dealing with the same thing with those who say they love me. When I do not respond to what they think is best for me then they are offended... I am sure they think we are unappreciative. I wonder if we are suppose to change?? Just a thought. We have to take care of ourselves. We have to watch our stress level because it has a direct effect on our pain. Perhaps we need to learn to ...as Taylor Swift sings... "Shake it off" and ignore them ... We can not control the behavior of anyone else. Can not control their attitude. But we can control the effect we allow them to have on us. What do you think?
As far as an animal... I have been wanting a service/ therapy monkey. You can get them free if you are home bound ... I am not. Oh, I've had both types of birds you are considering. They are very messy. Its a lot of work caring for them. They need to go to the vets, have their nails trimmed. Wings clipped. Cages cleaned often...etc. You may want to rethink the bird. Again, I am sorry ... Your loved one isn't being so loving. I agree with everyone else...we are here for you. Anytime you need to talk or vent...we are listening.

Feb 27, 2016 12:20 AM

You're writing is a good influence - I tend to isolate when I need support, am in pain and depressed. There's understanding here.
I wonder if others are stunned, don't know how to act around us, how to help, or how to respond when we talk about the pain, etc. I feel I have to explain on a daily basis and ask for help continuously. But our loved ones really do care, however inept their actions. So keep writing here.
In the states a companion animal can be "a reasonable accommodation" even for emotional support, where there's a no pet policy. It's a federal statute Section 504 and the Federal Fair Housing Amendment Act of 1988. Your doc might write a note to that effect.
Smiles & Hope

Feb 27, 2016 4:39 AM

I'm in England, so it's really hard to get a service dog. I don't meet the criteria for one, I would love a monkey though. I used to work at the zoo so I love animal's and how to look after them. I got hospital on Monday so hope I can get some good news then.

Feb 27, 2016 6:38 AM

Risa I'm in England too. Sorry you're going through this. Don't you just wish someone would invent a pain recorder so that we could let people experience what we're feeling all the time, just for 5 minutes? Hugs xx

Feb 27, 2016 7:24 AM

Good morning ,everyone I am also new to the forum I think I have commented maybe once or twice .... I am getting very frustrated with my doctor he seems to think that my pain is from narcotic dependence. And he's telling me that once I get off the narcotics that my pain will go away I was diagnosed with fibromyalgia by nurse practitioner ... which my primary care physician seems to discredit her ability to diagnose me he just called it chronic pain and I also suffer from lumbar and spine Radiculopathy. in 2008 and then he send me to a rheumatologist and he also diagnosed me with fibromyalgia but my primary care physician still seems to think that my pain is from opiate dependence and he also just started me on Cymbalta in which I find a little relief and I don't take my narcotics as much the reason why my PCP seems to think that my pain is made up is because I tell him that I hurt all over and at times I can't be specific where my pain is coming from... does anyone I understand it is very frustrating and I am at the end of my rope .....does anyone have any suggestions for me on what the next step should be... I can no longer work because the stress level also brings about chronic pain. And intensify pain. I hurt all over and emotionally it's getting to me as well. My doctor suggested that I go through pain management where they control the amount of narcotics you take almost like a rehab what do you suggest I desperately need some suggest thank you very much for your input peace and blessings to all

Feb 27, 2016 8:31 AM

Painfree5050, first let me say, welcome to our community family. I am sorry you are going through such a difficult time with your pain. I have to tell you that this is a safe forum to vent your concerns and reach out for support, etc..
I don't understand why your doctor would say your pain is from narcotics when you are dealing with spinal rediculopafhy. This may be the cause of the majority of your pain. Going to pain management may be your saving grace. They will start you out checking your records from your rheumatologist and neurologist and pcp. They may start you on medication for nerve pain, an antidepressant and anti inflammatory meds. It's possible they will send you for physical therapy, massage therapy, biofeedback, ultrasound, etc. they will review the medication that you are already on and manage them. Pain management is NOTHING like rehab!! I've been going to pain management for 20 years and they started me the way I have described above. As time went by (I also had 29 surgeries in the first 18 years), they had to take me off nerve pain meds (Neurontin, gabapenten, lyrica, Cymbalta) because they didn't work and had adverse effects on my body and mind. I have to let you know that after years of tests, doctors (rheumatologist, neurologist, p/t, psychologist, pcp), I was diagnosed with degenerative joint disease and degenerative disc disease, RSD/CRPS, long thoracic nerve palsy, cervical spondalytic myelopathy, thoracic scoliosis, spondylosis, herniated discs throughout my entire spine, fibromyalgia, TMJ and a laundry list of other things that cause horrible pain. Whenever you have a spinal issue that causes horrendous pain, it may not be fibro that is causing it. Remember the nerves for your entire body are stemming from your spine and depending on where it is, you can suffer widespread pain. Give pain management a try. You have nothing to lose and everything to gain. I wish you all the very best and want you to know that we are here to support you so if you have questions or just need to chat, please reach out. There's always someone here reaching back. Also remember, as bad as things get, you CAN still find fun and laughter in your life. It doesn't seem possible at times but it is. And, laughter is good for you and we laugh here quite frequently. So, welcome once more, sending you gentle {{{Hugs}}} for support and prayers that you have a peaceful and less painful weekend. 💕🙏🏻🌻

Feb 27, 2016 9:53 AM

Do you take Depakote? I learned that it, and some other meds, go into your body's biotin receptors in order to work, and if the chemical is in there, the biotin has to wait. That's why our hair can fall out!
I found that taking biotin about 12 hours after that medication will help with the hair loss. I take 20000 mcg every day, along with vegetal silica (Horsetail ), and my hair grew back nicely, hooray.
Keep plugging along. You never know what odd combination will help you feel better.
Find what "treat" helps you feel better, whether a warm bath, a massage or acupuncture, or just a nice cup of tea or nap. Schedule time for YOU to have a treat time, some quiet down time where you can try to just BE.
I send warm wishes for you to feel better, and strength to find relief.

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