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new diagnosis - looking for help/support.
2 Replies
sandycub - December 11

I am a 44 yr old woman who 4 1/2 yrs ago was diagnosed with basilar migraines (intractable migraines generating from the brain stem). I have been on SSD since. I was originally put on morphine to a very high dose for the first year before the dr. got in trouble for giving me so much (by the DEA) and I switched neurologists and was switched to a daily regiment of Methadone to control the pain. As it has gone on a lot has gotten worse and I have noticed for more than a year things building - constant pain in my knees, my elbows (not to mention the constant pain in my head, neck and shoulders - I haven't been below a pain level 3 in 4 yrs), total insomnia (dispite being now on both Restoril and Rozerem), constantly having the "flu", etc. I felt like I was losing my mind and everyone around me thought if I just did their magic "something" I would feel better. Today I went to my pain mgmt dr and told him that now I have been having problems with tingling and numbness in my hands and feet, legs and arms. He said it was fibromyalgia. He also is sending me to a sleep clinic place.

He said "fibromyalgia" so calmly but I don't remember being told this before. But I have also had lots of memory problems since initially being diagnosed with the intractable migraines. I figured between the pain and the meds (9 regulars a day plus some "as needed") - it was the same reaction when he looked at my MRI's and other tests and told me that I had osteoarthritis in my neck right below the brain stem contributing to the pain of the migraines.

I now just feel overwhelmed. I need to find a new neurologist (the one I was seeing, at the Cleveland Clinic, I was lucky if I could get into every 12-15 months. Is a neurologist the right type of dr to help me with fibromyalgia? What type of dr is? I need the neuro anyway as my pain mgmt dr won't write the scripts for my seizure meds (Lamictal & Gabatril) which I need for the complex parital brain seizures which came with the basilar migraines (along with a myriad of other "secondary" problems.

I feel so overwhelmed right now. My life has fell apart since this all happened although I'm not sure that I am alone in feeling this way. On top of it my husband of 10 yrs walked out on me and my kids about 20 months ago - to another woman - because he couldn't deal with my "drama" of my "exxagerated illness". Just once I would have loved to see him live through one of my migraines that even moprhine couldn't control. (the dr. that got in trouble for getting me hooked on 200 mg of morphine/day wouldn't recognize that I suffered from a morphine intolerance). What this has done to my kids.

Sorry for the whining - guess I needed to get it out. But now I need to know where to go from here. Any thoughts or ideas?

 

tiaria - December 11

I can certainly understand why you are so overwhelmed. You have so much going on and not much help to get through it. I found that the best doctor who has helped me through all of my pain etc. is the doctor I see at the pain clinic. He not only understands what I am going through, and not just the pain, but everything else that comes hand in hand with fibro. He works with his patients when it comes to meds because he knows that not every pill works for everyone. It took me years to find him, mainly because my GP didn't tell me that there was such a thing as a "Pain Clinic", and I think he thought I was exaggerating my condition. When I first went, I saw a different doctor who said he could not help me, but I persevered and went back and saw my present doctor, and have been seeing him now for over 3 years. He gives me trigger point injections weekly and every three months I go into the OR for Facet injections, plus other kinds of shots. Without these injections, I would not be functioning at the level I am. I have fibro, osteoarthritis, and a lot of disc problems in my back and neck and the injections not only help with the fibro, but my other conditions as well. Check to see if there is a pain clinic in your area and get an appointment. If you see a doctor like I did who says he can't help, make an appointment with another doctor there. Don't give up!!!! I have met a lot of other patients at the clinic and they all say the same thing. It has helped them all tremendously. Hang in there, don't give up, there is help out there and I know how deflating it is to keep running into a brick wall, but, if you keep at it, you will get the help you need. Keep writing and let me know how you are getting on.

 

Gabbie - December 11

Hi Sandycub. What you are describing is certainly the syptoms of fibro and having your husband walk away must be so difficult and certainly adding more symptoms. My heart goes out to you. Fibro is very overwhelming when first being diagnosed because I don't think any doctor has given their patient a reason for this syndrome making it even more confusing. Somewhere on this forum "islandguy" has explained the many feelings that a newly diagnosed patient goes through and I'm sure you will probably experience them also. Also look for his recent forum entitled "helping normals to understand". I have had the symptoms for many years, but wasn't formally diagnosed until about year or so ago. I have experienced pretty much all the symptoms of fibro, sometimes just a few at a time and at others all at once. I'm not confortable with taking a lot of meds, and so far I have been able to find some relief with Tylenol PM to help me sleep, lidocaine cream for the worst of the pressure points and Advil when I have the most painful days. I also try to keep the stubborn part of my personality intact, focus on the good things in my life not allow the fibro to take over. It took awhile for me to come to terms with this condition because I too had to experience all those emotional "feelings" but when I did, it made it easier for me to accept it and go on. You really need to find a good rheumatologist for the fibro and I hope you have a family member or friend that will be there for you. Please stay with this forum. There is so much information here and this is a place where people truly understand and are willing to share their thoughts and questions also. I wish you the best.

 

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