Josana

[JOSANA]

I have had pain on my head so bad for over a year. I have to sleep sitting up so I won't put so much pressure on it. The pain is on the entire head between the skin and the skull, and I get pressure to my ears. Please, do any of you suffer from this because if you don't it would have to be related to my neck problems. Thank you all.

[Shadows-walker]

Have yo had your blood pressure checked just a thought ? Perhaps a vist to gp in morning it doesn't hurt to get these things checked out ?

Good luck shadow. X

[JOSANA in reply to Shadows-walker]

Wonder why you ask that? My blood pressure is so out of control. I am taking medication but doesn't stop it from going out of control. I will check it and it will be at 215/120. next day 145/78.

[Shadows-walker in reply to JOSANA]

I ask as when my head is really bad it's usually because of my blood pressure ,I do very little because of this my gp tells be to rest but mine has been nowhere near as high as yours ,I do suggest you go see your Dr,

That is the best advise I can give you the Dr an rest ,take care xx

[JOSANA in reply to Shadows-walker]

My head hurts between the skull and the skin as if bruised all over. I think it is inflammation. I have been to many doctors and they can't figure it out. They finally did a Rhizotomy and left me worse off. I got this pain cream that I rub on my pain spots. It is absolutely incredible. It has everything from aniinflamatory to pain stuff. It was mixed in the medical lab. My doctor ordered it. I cut my pain pill intake in half.

[Shadows-walker in reply to JOSANA]

When my head starts I won't to literally take off the top of my head last time it happened the gp took my blood pressure and said it was high nothing like yours but she put my duloxtine up by 30 mg and told me to rest go home to bed for 3or 4 days it has gone back down to 77 / 120 or 140 can't remember now to be honest ,you obviously need to go see your gp again take care xx

[JOSANA in reply to Shadows-walker]

I was sent to a heart specialist and she gave me several prescriptions on top of what I already had. I said no to them and am trying some natural stuff. I think the lack of sleep is causing these spikes. I am going to watch it and take that pill the hospital gave me if it spikes again. Thank you.

Love and Blessings Josana

[hamble99b]

what did your gp suggest?

have you seen a consultant about it?

it sounds like you've been putting up with a lot for a long time. I hope you find someone to help you soon.

regards,

hamble

[JOSANA in reply to hamble99b]

Yes dear, it has been 30 years. I am 65 now and still going with pain, insomnia and name it. I went to the Mayo clinic regarding my ILM or RLS whatever. They could not find the cause. I take Mirapex .75 if I increase makes it worse. Hate the drug cause it causes compulsive behavior. I tried requip but had no results.

[TheAuthor]

Hi JOSANA

I am so sorry to read that and I think you really should discuss the issue with your blood pressure with your GP to try and get it under control.

I want to wish you all the best of luck.

All my hopes and dreams for you

Ken

[JOSANA in reply to TheAuthor]

I have noticed that the Blood Pressure goes crazy when I don't sleep. When I sleep it stays normal. If you're trying to say it is not related to the Fibro, I will have to object to that because I' ve had the BP problem (because of pain) since I've had Fibro.

[TheAuthor in reply to JOSANA]

Hi JOSANA

Sorry if you thought I was saying it was not related as this is not what I meant, as blood pressure can go either way through pain, stress and so many other external factors. The point I was trying to make was about the long term effects of erratic or high blood pressure and it should always be monitored by a GP or Medical Specialist to try and advert any long term effects.

Take care

Ken x

[JOSANA in reply to TheAuthor]

Thank you for that. I am under treatment constantly and I refuse to take so many pills for blood pressure. I am trying alternative treatment. I was told that juicing beets and organic celery really helps. I try then the nausea doesn't allow me to follow a regimen so I end up quitting. But I take my blood pressure everyday and have the meds the hospital gave me in case it spikes. Will let you all know if it changes when I move from the mountains. I've been here two years and sick for two years. Love and blessings to you and thank you for this website. I never have been involved in any site like this but I am now.

[Highroost]

I used to have this and at times it was unbearable but my doctor prescribed beta blockers, normally used for high blood pressure, which I didn't have, and they worked! I have to be careful still, cos if I try to do too much, the pain is still there , but they were like a magic potion!

Hope you manage to find something that works!

Anne

[mercy53]

Hi iam fairly new to the site but can't believe your problem it is at the top of my list for my consultant tomorrow I do have high blood pressure but it's always controlled will txt tomorrow when ive been there

[JOSANA in reply to mercy53]

I take Lisinopro and it controls it pretty well, but if I sleep maybe 3 hours a night my BP goes nuts. The doctor at the ER gave me a prescription of what they give me at the hospital to lower it. Thank you, and how are you doing?

[Izumi]

I have suffered severe pain as you describe which also affects my face. An episode can last6, 7, 8 weeks. At the peak which will last at least a week I can get no rest as I can't stand any pressure on my face, forehead or skull at all. Nothing works and I have been hospitalised 3 times over the last few years with no solutions. I have low blood pressure. I do not believe it is connected to the FM and have been referred for a second time to a neuro surgeon. I do not believe there is anything serious wrong but I want to know what it is and is there any pain relief available. Good Luck.

[JOSANA]

I have excruciating pain all over my head. I have to roll a towel under my neck to be able to lay down. When I first got Fibro, I had face and forehead pain, like pressure. I could not stand it. Of course, I can't stand any pain I get from Fibro. I don't know if this is connected to the Fibro or not. What worked for the pain on my face and forehead is Benadryl for sinus or migraine headaches.

[B2WC]

I have this throbbing headache like someone drilling my head each minute I can't even walk, I had to resign from my work, I had black out a few times, and I am still under treatment, the specialists know this is a part of FM, but unsure whether due to deficiency/under active dopamine or soemthing to do with ATP/CNS or hormone level but all and all there are related with FM- but up to now they giving me tramacet (tramadol), gabapentin, topiramate, deluxetine, which I am taking at night, even though, I still feeling pain when I move, at least the pain can be controlled, you might like to ask your gp to refer you to your neurologist.

Hope this information will help you a bit. God luck!

[Ozzygirl64]

Hi hun

There are so many nerve ending under the skins surface and what you describe I have had and yes it is extremely painful touched or untouched. What you need to remember about fibro is that it is a chemical imbalance in the brain, so your pain may actually be mild, but becasue of the imbalance the brain interprets the signals as severe, even extreme to the point where we would just want to bang our heads against the wall. I also suffer cluster headaches which are not very nice. But for you I am hoping it is part fo your fibro hence the GPs cannot fathom it, which sounds more likely. The reason they cannot sure fibro is becasue they cannot possibly create a drug for it becasue 1( no one the level of imbalance and 2(every sufferer is different. What I do find helps greatly in a warm bath and put your head under the water, stay there for 5 minutes or so. DO NOT WASH your hair with shampoo whilst doing this as you will just aggravate the pain. DO NOT towel dry your hair, but just wrap in a toel and let it dry that way. I hope all this helps xxxxx

[JOSANA]

Ozzygirl64, I had a couple of cervical fusions (most likely unnecessary) Probably had Fibro back then. Anyway, this pain feels like infection or inflammation is between the skull and skin. Runs from neck to top of head. Pain Dr. thought it was neck causing pain did a rhizotomy that left me in excruciating pain throughout my body. Excuse this but didn't even know I had t tinkle and would pee in bed for two weeks. I could not even move without pain. I still have the pain in the head.