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Please help- I'm in so much pain!
Hi Everyone,
I've posted on the Fibro board before and received some feedback, but I've just had so much pain lately that I'm desperate for some help.
I'm a 22 year old female whose problems started this June when I began having bladder issues- It just felt like something was pushing on my bladder all of the time. I was told that I had a series of bladder infections and that eventually I had interstitial cystitis. The urologist put me on a lot of medication and nothing seemed to help. In July I started to develop serious joint pain in my knees, fingers, ankles, and elbows. By August the pain continued to spread into my muscles and more joints. Now, I'm having crushing pain in both of my shoulder and up by neck. The pain continues into my jaw which almost locks up and also causes ear aches. Occassionally I'll have brief tinglining in my hands or feet or heaviness in my pinky finger or thumb. Nothing has ever gone numb and I can feel all sensations- hot, cold, pain, etc.
My primary care physican performed all of these blood tests (CRP, ANA, lyme, lupus, Rheumatoid Factor) and they've all come back negative. However, the doctor said that inflammation may take awhile to show up. I was eventually told that I had fibromyalgia. However, when I went to Mayo and saw a Rheumatologist there he laughed at the idea and though I was just having a reaction to something and put me on MethylPrednisolone. It hasn't helped and I'm in so much pain and absolutely terrified. I've started developing serious yeast infections and the tip of my tongue has started burning.
The pain seems the worst in the mornings when I get out of bed and I almost seem stiff- making getting ready for work difficult. The stiffness seems to ease up throughout the day but will flare up again at night around 7:00. Changes in temperature or weather also seem to make the symptoms worse.
I've never had any health problems before and nothing like this has ever happened to anyone in my family. Could this be Fibromyalgia? I'm really frightened and would be grateful for any help! Thank you!
I've posted on the Fibro board before and received some feedback, but I've just had so much pain lately that I'm desperate for some help.
I'm a 22 year old female whose problems started this June when I began having bladder issues- It just felt like something was pushing on my bladder all of the time. I was told that I had a series of bladder infections and that eventually I had interstitial cystitis. The urologist put me on a lot of medication and nothing seemed to help. In July I started to develop serious joint pain in my knees, fingers, ankles, and elbows. By August the pain continued to spread into my muscles and more joints. Now, I'm having crushing pain in both of my shoulder and up by neck. The pain continues into my jaw which almost locks up and also causes ear aches. Occassionally I'll have brief tinglining in my hands or feet or heaviness in my pinky finger or thumb. Nothing has ever gone numb and I can feel all sensations- hot, cold, pain, etc.
My primary care physican performed all of these blood tests (CRP, ANA, lyme, lupus, Rheumatoid Factor) and they've all come back negative. However, the doctor said that inflammation may take awhile to show up. I was eventually told that I had fibromyalgia. However, when I went to Mayo and saw a Rheumatologist there he laughed at the idea and though I was just having a reaction to something and put me on MethylPrednisolone. It hasn't helped and I'm in so much pain and absolutely terrified. I've started developing serious yeast infections and the tip of my tongue has started burning.
The pain seems the worst in the mornings when I get out of bed and I almost seem stiff- making getting ready for work difficult. The stiffness seems to ease up throughout the day but will flare up again at night around 7:00. Changes in temperature or weather also seem to make the symptoms worse.
I've never had any health problems before and nothing like this has ever happened to anyone in my family. Could this be Fibromyalgia? I'm really frightened and would be grateful for any help! Thank you!
This is what has helped me and I have had severe fibromyalgia for many years and I am no longer in 24/7 pain, no meds I had been given ever helped.
Now when I have a flair-up, pain/pressure/tingling/sort of numbness I search that general area and massage it with my thumb or heel of my hand as hard and long as I can. Why? Because I discovered that as I do so (of course it hurts) the swelling lessens and I eventually find a very specific lump. This lump may or may not move as it is massaged and you may need to do this as much as posible for hours, sometimes days, but it will eventually disperse. You will probably find you have many of these lumps in different areas of your body. Of course they press on nerves etc.
Hot packs have proven beneficial to ease the pressure/pain, and I have found the massaging works better after heat application as well.
What finally worked for me for the shoulder pain, it go so bad I could no longer use my arm and had to put it in a sling. I had a lot of internal swelling and lumps in the soft tissue and it felt like someone was pulling my shoulder out of the socket. I decided I had nothing to lose by trying cold packs to see if it would reduce some swelling, there was no way to massage any lumps because they were not accessible. For almost 2 weeks I used cold packs on that shoulder as much as I could stand it. Finally after having had this for years and it having gotten that bad, I got relief. Now whenever it flairs I massage the area and if I cannot access it any lumps , cold compress help reduce the swelling.
I understand you are in so much pain everywhere, all the time, that you feel discouraged and helpless. I have gone from being so bad I was unable to move or even speak for hours at a time, even unable to shower myself, for a couple of years to being almost normal some of the time now.
I don't want to overwhelm you with too much information right now, but I will answer any questions you might like to ask.
Don't give up!
Now when I have a flair-up, pain/pressure/tingling/sort of numbness I search that general area and massage it with my thumb or heel of my hand as hard and long as I can. Why? Because I discovered that as I do so (of course it hurts) the swelling lessens and I eventually find a very specific lump. This lump may or may not move as it is massaged and you may need to do this as much as posible for hours, sometimes days, but it will eventually disperse. You will probably find you have many of these lumps in different areas of your body. Of course they press on nerves etc.
Hot packs have proven beneficial to ease the pressure/pain, and I have found the massaging works better after heat application as well.
What finally worked for me for the shoulder pain, it go so bad I could no longer use my arm and had to put it in a sling. I had a lot of internal swelling and lumps in the soft tissue and it felt like someone was pulling my shoulder out of the socket. I decided I had nothing to lose by trying cold packs to see if it would reduce some swelling, there was no way to massage any lumps because they were not accessible. For almost 2 weeks I used cold packs on that shoulder as much as I could stand it. Finally after having had this for years and it having gotten that bad, I got relief. Now whenever it flairs I massage the area and if I cannot access it any lumps , cold compress help reduce the swelling.
I understand you are in so much pain everywhere, all the time, that you feel discouraged and helpless. I have gone from being so bad I was unable to move or even speak for hours at a time, even unable to shower myself, for a couple of years to being almost normal some of the time now.
I don't want to overwhelm you with too much information right now, but I will answer any questions you might like to ask.
Don't give up!
I had the prob with the bladder infections, yeast from the antibiotics...I always ask for diflucan when ever I am given antibi.....Have u had any MRI's...any accidents......I hope u find relief.
Good luck
Godspeed
"selma"
Good luck
Godspeed
"selma"
Hi All,
Thank you so much for your advice. To answer some of your questions:
1) No, I've never had any cervical injuries or any problems of that sort. I've been perfectly healthy until June and then everything seems to have gone downhill. The more medicine I'm put on, the worse I seem to get.
2) Yes, I was treated with unbelievable amounts of antibiotics. One doctor wanted to put me on Cipro for 6 months (I did about 2 1/2). I've also been on and off Diflucan for the yeast infections that keep coming up, Doxycycline, and Metronidozol. They've now put my on Methylprednisolone which I mentioned earlier and that stuff is an absolute nightmare!
The pain seems at its worst when I'm laying down which is terrible because sometimes you're in so much pain that that seems to be the only thing that could help. If any pressure is put upon my shoulders or neck they instantly begin to throb and I feel it all up and down my arm, my neck, and into my jaw.
My joints also seem to be constantly cracking. Is this a problem for anyone else? If I can get them to pop it gives me a little bit of relief. Otherwise, I just feel so stiff.
Finally, does anyone find that hot baths help? They've been a lifesaver for me sometimes. Any foods that help either?
Thank you so much for your advice. To answer some of your questions:
1) No, I've never had any cervical injuries or any problems of that sort. I've been perfectly healthy until June and then everything seems to have gone downhill. The more medicine I'm put on, the worse I seem to get.
2) Yes, I was treated with unbelievable amounts of antibiotics. One doctor wanted to put me on Cipro for 6 months (I did about 2 1/2). I've also been on and off Diflucan for the yeast infections that keep coming up, Doxycycline, and Metronidozol. They've now put my on Methylprednisolone which I mentioned earlier and that stuff is an absolute nightmare!
The pain seems at its worst when I'm laying down which is terrible because sometimes you're in so much pain that that seems to be the only thing that could help. If any pressure is put upon my shoulders or neck they instantly begin to throb and I feel it all up and down my arm, my neck, and into my jaw.
My joints also seem to be constantly cracking. Is this a problem for anyone else? If I can get them to pop it gives me a little bit of relief. Otherwise, I just feel so stiff.
Finally, does anyone find that hot baths help? They've been a lifesaver for me sometimes. Any foods that help either?
Sounds like your body is reacting to chronic infections...I feel your pain.
Just a little about me - I had a nasty fall where I twisted my neck and back and I now have the muscle spasms, stiffness, joint aches, tingling, numbness, burning, etc. (all the symptoms you are describing) My neck is so stiff that sometimes my jaw locks up too. I agree with the above comment, there is definitely a connection to fibro and cervical injuries. I was diagnosed with fibro with these symptoms.
I also had chronic fatigue for years prior to the injury with occasional flare ups where it felt like the flu- No muscle spasms or specific joint aches, just general achiness all over that would go away in a day or two with rest. There also seems to be a connection between chronic fatigue, fibro and infections. I had mono in my teens, so this may account for the infection component. Also think about chronic bacterial infections such as Lyme Disease and how it has many of the same symptoms of Fibromyalgia...I think we all need to look into chronic infections which maybe the culprit for our symptoms.
It's possible our immune systems are already compromised due to chronic infections, then when there's an injury or another infection, our bodies just cannot heal and begins "act out". I also think that Prednisolone suppresses your immune system even more, so be careful. Were you ever treated with antibiotics for your bladder infections? Just curious to see if any of your symptoms would improve with antibiotic treatment.
As far as dealing with the pain - ususally doctors try a muscle relaxant first (either SOMA or flexeril) and if you aren't sleeping they want to put you on amitriptyline, but doxepin may be better and have fewer side effects. Lyrica is usually reserved if these other treatments don't help.
My Best,
Ree4tu
Just a little about me - I had a nasty fall where I twisted my neck and back and I now have the muscle spasms, stiffness, joint aches, tingling, numbness, burning, etc. (all the symptoms you are describing) My neck is so stiff that sometimes my jaw locks up too. I agree with the above comment, there is definitely a connection to fibro and cervical injuries. I was diagnosed with fibro with these symptoms.
I also had chronic fatigue for years prior to the injury with occasional flare ups where it felt like the flu- No muscle spasms or specific joint aches, just general achiness all over that would go away in a day or two with rest. There also seems to be a connection between chronic fatigue, fibro and infections. I had mono in my teens, so this may account for the infection component. Also think about chronic bacterial infections such as Lyme Disease and how it has many of the same symptoms of Fibromyalgia...I think we all need to look into chronic infections which maybe the culprit for our symptoms.
It's possible our immune systems are already compromised due to chronic infections, then when there's an injury or another infection, our bodies just cannot heal and begins "act out". I also think that Prednisolone suppresses your immune system even more, so be careful. Were you ever treated with antibiotics for your bladder infections? Just curious to see if any of your symptoms would improve with antibiotic treatment.
As far as dealing with the pain - ususally doctors try a muscle relaxant first (either SOMA or flexeril) and if you aren't sleeping they want to put you on amitriptyline, but doxepin may be better and have fewer side effects. Lyrica is usually reserved if these other treatments don't help.
My Best,
Ree4tu
I was wandering if you have tried Elmiron for you bladder cystitis? I take it and it does give some relief. I know it can be so painfull and can slow you down, I also have fibro, the bladder issues go along with the fibro.
In my opinion, it does sound like fibro, the joint pains that you have might be the ligaments and maybe not the joints that is what I have experienced with my fibro, it is all in my muscles! Well not all also my eyes, ringing in my ears, rib pains, I could go on and on, but you need to ask around you area and find a doctor who treats fibro, I am sure you might need some more tests to rule out other things, but having a doctor who understands what you are going through will make a big difference.
From what I have read you may never show any inflamation in your blood work with the fibro.
Also curious, you talk about the pain in your neck area, have you ever had any injury to you neck, or upper back?
I did not develope this fibro flare that I am having untill after I had a cervical injury, and my doctor told me that 30% of people with a cervical injury have had a fibro flare afterwards.
Best of luck to you, let us know how you are doing, also have you been put on Lyrica?
I did not have any luck with it but from what I have read here alot of people find it to be helping them.
bdm92
In my opinion, it does sound like fibro, the joint pains that you have might be the ligaments and maybe not the joints that is what I have experienced with my fibro, it is all in my muscles! Well not all also my eyes, ringing in my ears, rib pains, I could go on and on, but you need to ask around you area and find a doctor who treats fibro, I am sure you might need some more tests to rule out other things, but having a doctor who understands what you are going through will make a big difference.
From what I have read you may never show any inflamation in your blood work with the fibro.
Also curious, you talk about the pain in your neck area, have you ever had any injury to you neck, or upper back?
I did not develope this fibro flare that I am having untill after I had a cervical injury, and my doctor told me that 30% of people with a cervical injury have had a fibro flare afterwards.
Best of luck to you, let us know how you are doing, also have you been put on Lyrica?
I did not have any luck with it but from what I have read here alot of people find it to be helping them.
bdm92
Yes it can be fibro, and it can be many other things as well...u need to be tested to rule things out. ur symptoms r very similar to mine.Both my mom and sister have fibro and i have many symptoms too. I was told I had tarsel tunnel- another connective tissue disorder.....but during my tests they found chiari malformation and cervical spinal stinosis.Please be completely checked...they looked for lupus, MS, and I was not given any meds!!! I have had most of these symptoms since I was a child......so I compensate to avoid the pain.OC pain meds do not work.I am activly seeking a specialist.
Good luck
Godspeed
"selma"
Good luck
Godspeed
"selma"
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