Aa
Just been diagnosed with Fibro
Hi Everyone
I am new to this site I have been on the ms site since June 2008.
I have been going through lots of different things as follows
My body buzzes when I lower my chin
My arms / legs ache
My fingers and toes cramp
My eyes see flashing lights
My face tingles and feel like its drooped
My skins sensitive
My bums cheeks are painful and colder than a turkey in Tescos fridge (waiting for an online delivery)
My back muscles are tight
My shoulders hurt
I'm fatigued
I have got vertigo
My rib cage go tight when I cough or sneeze
my husband has seen and felt my shoulder and back muscles go into spasm and ripple .
I thought I could have ms the neuro sent me for a mri and ultra sound to rule out ms and mini strokes I was told a little while ago that the results came back clear which was great so what have I got its in my head well thats how the neuro came across.
In the mean time my GP had got me an appointment to see the rhromertoligist I got a cancellation and went to see him xmas eve.
What a difference straight away I knew I was going to be listened to Im going on a bit here so to cut a story short he diagnosed me with Fibromyalgia.
He wants me of the steroids which my GP put me on because he thought I had Polymyaliga and I have to do a one min walk every day which I have been doing since xmas eve its killing me.
Thats it I dont want to bore you all and my arms are killing me.
I am new to this site I have been on the ms site since June 2008.
I have been going through lots of different things as follows
My body buzzes when I lower my chin
My arms / legs ache
My fingers and toes cramp
My eyes see flashing lights
My face tingles and feel like its drooped
My skins sensitive
My bums cheeks are painful and colder than a turkey in Tescos fridge (waiting for an online delivery)
My back muscles are tight
My shoulders hurt
I'm fatigued
I have got vertigo
My rib cage go tight when I cough or sneeze
my husband has seen and felt my shoulder and back muscles go into spasm and ripple .
I thought I could have ms the neuro sent me for a mri and ultra sound to rule out ms and mini strokes I was told a little while ago that the results came back clear which was great so what have I got its in my head well thats how the neuro came across.
In the mean time my GP had got me an appointment to see the rhromertoligist I got a cancellation and went to see him xmas eve.
What a difference straight away I knew I was going to be listened to Im going on a bit here so to cut a story short he diagnosed me with Fibromyalgia.
He wants me of the steroids which my GP put me on because he thought I had Polymyaliga and I have to do a one min walk every day which I have been doing since xmas eve its killing me.
Thats it I dont want to bore you all and my arms are killing me.
I'm so sorry. I did see the 1 min, but actually thought maybe you had meant 1 mile. I know what you mean about stopping and not being able to start again...just don't have the energy that we use to.
I believe my threshhold is low, but my tolerance is high. When I get a scratch, bump or otherwise it hurts like the dickens, but I can take the pain longer than someone else who might head out to the local doc. office with a complaint.
Emotionally, I believe there are stages/adjustments to any pain process. It's taken me about two years to reach a level of acceptance and I still struggle at times. I think we all have our 'pity days' and that's ok too.
There is some good info. on our Health Pages (on the right hand side of your screen) about fibro, treatments and research. I hope your testing goes well and please keep us updated.
I believe my threshhold is low, but my tolerance is high. When I get a scratch, bump or otherwise it hurts like the dickens, but I can take the pain longer than someone else who might head out to the local doc. office with a complaint.
Emotionally, I believe there are stages/adjustments to any pain process. It's taken me about two years to reach a level of acceptance and I still struggle at times. I think we all have our 'pity days' and that's ok too.
There is some good info. on our Health Pages (on the right hand side of your screen) about fibro, treatments and research. I hope your testing goes well and please keep us updated.
Gosh I ran away with my self and really all you ask was what med the rhumi has me on chatter box pills lol none at the moment.
What is fibromyaliga?
Fibromyaliga is a name for widespread pain affecting the muscles but not the joint. It is a chronic condition,but it is not life-threatening or progressive and and does not cause permanent damage to muscles,bones or joints.There are usually no outward signs of the condition and people with fibromyalia often look well but feel awful.Because of this other people may not appreciate the pain and tiredness you are suffering and this can cause additional distress.However, it is important to stress that the pain suffered by people with fibromyalia is real and may be severe,even though it is usually not associated with visible swelling or deformities of the muscles or joint.
Fibromyaliga is a name for widespread pain affecting the muscles but not the joint. It is a chronic condition,but it is not life-threatening or progressive and and does not cause permanent damage to muscles,bones or joints.There are usually no outward signs of the condition and people with fibromyalia often look well but feel awful.Because of this other people may not appreciate the pain and tiredness you are suffering and this can cause additional distress.However, it is important to stress that the pain suffered by people with fibromyalia is real and may be severe,even though it is usually not associated with visible swelling or deformities of the muscles or joint.
Thank you for that advice I feel worn out reading it lol.
I have noticed that each time I got out of my HOT bath oh I felt so ill weak pain you name it,I soon came to realise I had to have warm baths yuk,sometimes my bones feel so cold and the only way I can warm them up is by having a HOT bath,but I have found away round this when I have finished having my bath I pull the plug and turn on the shower which is on cool very cool as the water runs away the cool shower is cooling my body down then I get under it for a second then out seems to work.
I have only had one visit to the rhumi and this is when he said about the 1min walk he told me if I do it for 2 weeks then miss a day I might as well not have done the last 2 weeks it would be like starting all over again and that's the only reason why im doing it.
He also said that he wants me off the steroids because I was taking them for polymyalia which he really does not think I have due to still being in pain while taken them if it was poly the steroids would have taken the pain away god I hope im not repeating my self which I often do lol any way.
Before I left he sent me for blood test.
He said he wants to see me in 4 months now I am assuming that he is leaving it that long because one all the blood test will be back and two I will be off the steroids,oh and they are probably busy and have to put months between visits rather than weeks.
As I was leaving I said the pain killers I am taking are not helping he said no they wouldn't we need to get your sleep sorted.
Sleep he was saying its the type of sleep we get is half the problem we are not getting the right sleep.
He gave me a good leaflet to read the best part I read was ill put it on the next post.
How do you cope emotionally before I was told I had fibro baring in mind I thought I had ms I cried about 3 to 4 times a day now I know what I have I only cry 1 to 2 times a day because im in pain and because I feel sorry for myself.
I must say I have a very high threshold to pain and i am a very positive person but some days oh some days what the point,enough of that pull your socks up right ill post that passage in the leaflet I got.
Once again many thanks
I have noticed that each time I got out of my HOT bath oh I felt so ill weak pain you name it,I soon came to realise I had to have warm baths yuk,sometimes my bones feel so cold and the only way I can warm them up is by having a HOT bath,but I have found away round this when I have finished having my bath I pull the plug and turn on the shower which is on cool very cool as the water runs away the cool shower is cooling my body down then I get under it for a second then out seems to work.
I have only had one visit to the rhumi and this is when he said about the 1min walk he told me if I do it for 2 weeks then miss a day I might as well not have done the last 2 weeks it would be like starting all over again and that's the only reason why im doing it.
He also said that he wants me off the steroids because I was taking them for polymyalia which he really does not think I have due to still being in pain while taken them if it was poly the steroids would have taken the pain away god I hope im not repeating my self which I often do lol any way.
Before I left he sent me for blood test.
He said he wants to see me in 4 months now I am assuming that he is leaving it that long because one all the blood test will be back and two I will be off the steroids,oh and they are probably busy and have to put months between visits rather than weeks.
As I was leaving I said the pain killers I am taking are not helping he said no they wouldn't we need to get your sleep sorted.
Sleep he was saying its the type of sleep we get is half the problem we are not getting the right sleep.
He gave me a good leaflet to read the best part I read was ill put it on the next post.
How do you cope emotionally before I was told I had fibro baring in mind I thought I had ms I cried about 3 to 4 times a day now I know what I have I only cry 1 to 2 times a day because im in pain and because I feel sorry for myself.
I must say I have a very high threshold to pain and i am a very positive person but some days oh some days what the point,enough of that pull your socks up right ill post that passage in the leaflet I got.
Once again many thanks
Welcome to the forum!
I hope that you find support here. I have been diagnosed with fibro/cfs for 3 years now. That dosen't make me an expert, your rhumi is that. I can share what I have learned and what works for me.
Yep, it's very good to start and stay moving, even if it hurts. Ok, it hurts to think with this stuff nevermind move. When I really hurt, my husband helps me with a bath, yep, an old fashioned warm water (not hot) bath. Notice I said helps, because, I don't have great balence anyway, and when I hurt, well it's not pretty. While I am in the tub, I move. Once I get nice and warm, I move my feet then my legs, then my hands then my arms. Take 30 minutes to do this, take your time. Then get out, rub some soothing lotion on your skin and don some really warm sweats or flannels to cuddle in. Yep, I do this during the day when I need to and can. Then after a few weeks, Yes WEEKS, then try move a little once you get out of the tub.....not a lot just a little more than in the past...not necessarily outside, around the house. Make a lap around the kitchen, to the living room, to the bed room and back again. Then REST. You don't say what meds the rhumi has you on, but a pain med should be available for you. Remember to eat well, drink lots of water, and research and read a lot about what you can expect.
Good luck and ask lots of questions!
Kerri in AR
I hope that you find support here. I have been diagnosed with fibro/cfs for 3 years now. That dosen't make me an expert, your rhumi is that. I can share what I have learned and what works for me.
Yep, it's very good to start and stay moving, even if it hurts. Ok, it hurts to think with this stuff nevermind move. When I really hurt, my husband helps me with a bath, yep, an old fashioned warm water (not hot) bath. Notice I said helps, because, I don't have great balence anyway, and when I hurt, well it's not pretty. While I am in the tub, I move. Once I get nice and warm, I move my feet then my legs, then my hands then my arms. Take 30 minutes to do this, take your time. Then get out, rub some soothing lotion on your skin and don some really warm sweats or flannels to cuddle in. Yep, I do this during the day when I need to and can. Then after a few weeks, Yes WEEKS, then try move a little once you get out of the tub.....not a lot just a little more than in the past...not necessarily outside, around the house. Make a lap around the kitchen, to the living room, to the bed room and back again. Then REST. You don't say what meds the rhumi has you on, but a pain med should be available for you. Remember to eat well, drink lots of water, and research and read a lot about what you can expect.
Good luck and ask lots of questions!
Kerri in AR
Thank you all for your kind comments
Errrrrrrrrrrrr
VaBreeze ......
My walk is for 1 min not 1 hour
A 1 hour walk is but a distant memory, the 1 min is killing me, anything remaining that wasn't hurting before the min sure is after it, if I was to rest after 30secs then I'd never get going again.
I remember when I could run, jump and even do the odd cart wheel... its crazy
Errrrrrrrrrrrr
VaBreeze ......
My walk is for 1 min not 1 hour
A 1 hour walk is but a distant memory, the 1 min is killing me, anything remaining that wasn't hurting before the min sure is after it, if I was to rest after 30secs then I'd never get going again.
I remember when I could run, jump and even do the odd cart wheel... its crazy
Welcome. You are the first person besides myself that I have heard say that your face droops.
I hope we can all be of support
I hope we can all be of support
Welcome to the community. It sounds like you've had a difficult time with your physicians and a dx (we hear this story a lot here). It is not in your head...well it is, but it's not a psychological problem. It seems to effect the central nervous system,
It's great to hear that your testing came back negative and you now have someone who will listen to your symptoms and help you. Taking you off of the steriods, if you don't need them, is a good call because they cause so many side-effects. One of the most important things when having FMS/CFS is learning to pace yourself. Walking is a good form of therapy so maybe you could break up your walks into two 30 min. ones, giving yourself a rest inbetween.
I hope you find relief from some of the symptoms with your new physician. Be good to yourself and take care.
It's great to hear that your testing came back negative and you now have someone who will listen to your symptoms and help you. Taking you off of the steriods, if you don't need them, is a good call because they cause so many side-effects. One of the most important things when having FMS/CFS is learning to pace yourself. Walking is a good form of therapy so maybe you could break up your walks into two 30 min. ones, giving yourself a rest inbetween.
I hope you find relief from some of the symptoms with your new physician. Be good to yourself and take care.
Hi there;
Sorry about the late reply but I've been down for several weeks and having a difficult time getting back on my feet. Welcome to the community, there are so many good people here, and you'll find a bunch of info that will help, we all know whst you're going through so post anytime and PM if you ever need to vent or to just talk. Take care.
gentle hugs
Angel
Sorry about the late reply but I've been down for several weeks and having a difficult time getting back on my feet. Welcome to the community, there are so many good people here, and you'll find a bunch of info that will help, we all know whst you're going through so post anytime and PM if you ever need to vent or to just talk. Take care.
gentle hugs
Angel
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