Journal

I didn't think it was progressive either. I've only had this for over 2 years, and I get in such bad flares that I feel like it's getting worse too.
Doctors can only treat our symptoms.. I really wish they would find something that works!

I think as we get older its a bit progressive, or its part of the aging thing. I wish you the best Hon! I do get the jumping ticks and stabbing pains as well.

I think a lot of us are going through this right now. Perhaps the weather...??? I always seem to feel worse this time of year and each year seems worse. Once spring gets here, I feel better.

I don't think progressive is really the word they mean when they say that. It does get worse....its just not degenerative. I had one doc tell me that I would "grow out of it". ??? Excuse me??? Grow out of it??? And this was my pain doc that specialized in fibro. Wonder why I quit going??? LOL

Just hang in there, sweetie. Brighter days will come. Gentle hugs...

When I was first diagnosed in 1986, I was told it was not progressive, however I am much worse than when I was diagnosed. I now have a wonderful rheumatologist who actually confirms that it is progressive. I also have arthritis right along with it. My husband is not at all supportive of me. His theory is well every one gets pain so you just need to get over it. He works two jobs so he does not have to be around me. It is hard sometimes because we live in such a rural area that there are few if any to talk to and that is why I come here to DS.
Isn't it great to have people who understand and lift each other up. It keeps me from getting too far into a rut.
Prayer helps me, I enjoy singing and spending time with my animals. I think it is important to have distractions from our pain.
Life can be rough sometimes and I think we need to keep a good sense of humor. I laugh at myself all the time. Especially during my fibro fog moments.
I do some really stupid things sometimes. If you need a good laugh, send me a PM and I will be happy to share some of my foggiest moments.

I am sorry you are having such a miserable time with your Fibro and other problems. I know where you are coming from, because in the past 9 years, I have never be pain free. It is getting harder for me to get dressed and the pain meds I am given don't help. You need to find another doctor who you like and will be a little better attitude. My husband is the same as yours. It gets to a point that I just won't say anything. I will go to another room and cry. He is very healthy and doesn't understand my pain either. You are doing the best you can. Justy hang in there. You are doing fantastic. Keep it up. I love you. Ellie

First of all, I wish I could make you a hot cup of tea and listen to every single thing you need to say, responding "You poor dear" (it's my favorite form of therapy)

FM can get better or worse. The problem with a FM diagnosis is that doctors stop paying attention to new symptoms that might indicate another disease or hormone/vitamin imbalance. From your description, he should test you for MS immediately. Living in Germany (I think that's where you live) makes it difficult to find a new doctor...so you may have to work with the one you have.

Thyroid imbalance could account for your condition. Maybe you need a better antidepressant or need to add another one. Depression is a physicalogical state (not just mental) that can increase pain receptors. So not more pain...just a much more intense experience of it.

Estrogen and progesterone imbalances might cause some of it. If I were you, I'd go to your current doctor and request (if necessary demand) a panel of diagnostic test that includes TSH/ T-4, Free/ T3, Free/ Reverse T-3, Estrogen, Progesterone, Vitamin B12/ Vitamin D/Any viral diseases like Lyme Disease, Epstein-Barr common in your area, and stealth diseases like Mycoplasma Pneumoniae, candida, etc.

If we operate on the assumption that FM is an impaired immune system it means we seek out any "regular" disease that doesn't take normal people down, but really kicks our FM butts.

The MS sounding symptoms: muscle ticks /feels like bubbly water under the skin /electric shock sensations going down my arms/ IN PARTICULAR losing the feeling in my feet (one of my best friends has MS) can be stopped immediately with steroids and drugs (VERY EXPENSIVE) that keep the disease in check. I think MS requires an MRI to diagnose. I hope this is helpful. I don't want to scare you, but I want to give you some ammunition to make your doctor do his damn job.

I hope this helps - you may have to wait for the FM clinic- but I think your current doc can order these diagnostic tests himself...if you can get him to.

Heya hun,I will PM you and feel free to vent away whenever you need to hun,afterall this is your journal,your space and it is better out than in!!!!!!!

I was also told this was non progressive and yet my pain is much worse than 10 years ago. I did just get dx but that doesn't mean I haven't had it for years. I agree with exdiva... get checked for other things as well. All things are not fm. I do have a question though... what is co/codamal 30/500? I have never heard of this.... is it effective? By the time you get this I really hope some of your pain has lightened and today looks like a better day!

I think two or three things happen. It is progressive are bodies don't get the proper sleep to repair the cell damage. Also time takes it's toll,for me the constant pain wears me out the pain I had ten years ago I might call it a 5,that same pain today is a 10 I have less tolerance for pain. Also other illness creep in and lower that tolerance even more. You should see a ruemotologist and a neurologist don't let ever thing get sweep under fibro. I just found out I have nerve damage which is not suppose to be fibro related. Also get a sleep study done you may have sleep apnea or you may have other sleep problems,just because you think you are sleeping you maynot be going into all stages of sleep. You may want to ask your doctor for a muscle relaxor they help with the spasams you described. For me the muscle ticks got worse for awhile because the muscles were so tight that when they relaxed from the muscle relaxor they would tighten right up again. I stuck with the muscle relaxor and things are a little better now. Hope you get some relief soon.

Hi

I had no idea you were so close! I live on Hayling Island.

Do you realize we are on exactly the same medications! We are even on the same dose of co-codamol! I dont find the amitryptalin helps me sleep very much either, insomia is my middle name. I dont know about you but im on disability living allowance and income support as, thanks to cfs, I am unable to work. You should check out your eligability!

You have to be honest with your husband. Remember, your in a bad spot right now but that doesnt mean it will last forever!

Do you know of 'Hampshire friends with m.e'? They are an excellent support group for m.e/cfs/fibro and meet once a month. There are many groups all over Hampshire. Its low key, turn up for coffee and a chat or doze off in the corner. You dont have to make it every month, just when you are able. They can get you involved with the clinic quicker as they are involved with it! Ive been the clinic in Southampton and am now enrolled in their course due to start next month. I shall let you know what its like.

Take care of yourself and dont feel guilty for being unwell, you cant help it.

Much love to you
Danielle
x

First knowing that everybody responds differently to this condition. One thing that I noticed over this last bout... over a 4 year period.. was that inactivity caused alot of trouble, I was doing a lot of research on the PC, and then reading, etc, i was doing possitive things but my body was in limbo... a Fibro patient needs to stay moving, even if it hurts.. I take pain meds day and night, and took anti inflams.. for many years,, you should stop taking those unless you do actually have inflamation. It is not a symptom of Fibro.. some people do have other conditions so it warrants taking them, they are bad for your gastric, and create fluid retention, that is something that causes pain in my joints, and legs. If you are having lots of muscle spasms.. I would start taking a high dose B complex for a time, it will help with nerves. You may have something else Neurological happening, I developed "idiopathic Neuropathy", somthing that is showing up in Fibro patients.. dont know why, but I do have disc disease in my neck, which is causing pain in my upper quardrant, neck shoulders, arms and head and face. I started taking Gabapentin which does help some, but has its own side effects not everyone can take it. And by the sound of your appologizing for your ranting.. you may be under some other stress that will cause lots of pain physical and emotion.. I hope this has been some help.

You are so brave to keep this pain from your husbad. I don't know what I'd do. I feel terrible for you. I hope you feel better soon.

you might want to try ambien or ambien cr, it will help you sleep. Neurontin is what i take for the fibro itself, try these on your doc and see what he has to say.

Doing a little dance for lisa, whoa hoooo, take care and glad your feeling better.